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Thread: Mutilation of daughter as disability treatment

  1. #181
    I originally wrote this:
    I agree with the several posters above. It was an extremely difficult decision to have to make. I have no doubt it caused them a lot of agony. I also have no doubt that the best interest of the child is foremost in their minds. I could not support any harassment of the parents or their doctors for their actions.
    - Richard
    After reading the subsequent posts - some eloquent, some drivel - my opinion has shifted. From the little I know - not having read the technical papers and not personally knowing the child, parents or doctors - I now think that the wrong decision was made in this girl's treatment. Additionally, I would strongly argue that this should never be a standard treatment; however, this is not a change in my thoughts - many medical issues are extremely individual, and I tend to be on the side of allowing considerable (arguably excessive) freedom in their resolution. The standardization of medical treatments can have undesirable results (has anyone here never had to fight the bureaucracy - e.g., think powerchairs?). Nevertheless, I (speaking from the depths of Leif's slammer) stand by my last 4 sentences.
    - Richard

  2. #182
    The more I see the consistency of reaction in those injured young, the more I think my reaction as an adult, and a mom, and relatively new sci must be wrong. Shannon's reaction is tipping the scales for me.

    I don't see 3 month olds as autonomous beings. To me they are somebody's baby. That's why they're so much trouble to raise, I guess-they're trying to get past being someone's child.

    God help her family if they made such a terrible mistake. It actually doesn't surprise me so much when the medical establishment bungles.

    I hope I still disgust Scorpion though. It makes me feel special.

  3. #183
    Senior Member Scorpion's Avatar
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    Quote Originally Posted by betheny
    I hope I still disgust Scorpion though. It makes me feel special.
    Yup...

  4. #184
    Quote Originally Posted by RehabRhino
    Good theory. May be some truth in it. Can I just indulge myself by pointing out that I'm only 2 years post and, as I said, never felt comfortable with it. It's so wrong I cannot believe anyone can sit on the fence about it.

    Didn't take a post from Wise to form my opinion either.


    Rhino, I think for some, it helps to hear from an authority figure they have some respect for and trust, despite a few here much earlier in the thread, having stated many of the very same points listed out by Wise.

    Also, one doesn't necessarily have to have direct or long-term experience to have an understanding of what's going on here and see it in a broader context. I think one's sensibilities can help guide and shape understanding that extends beyond personal experience.

    If people did a more thorough examination of this case, especially from professional medical opinions from all opposing sides and the relevant groups speaking out on the issues, judgments may not have been made in such haste. Even without knowing much regarding the specifics of the case, the overriding moral and ethical questions, and their (social) implications, could still have been discussed.

    I was hoping to discuss these issues, as I questioned and judged some of it in my first post here. It's good to see how the thread is developing - not because people are agreeing or supporting one thing or another, but because now, people are more willing to examine the broader issues/implications.

    Again, it is also important for us, as SCI persons, to look at what values we as SCI disabled individuals (mostly acquired) impose on others living with disabilities.

  5. #185
    Moderator Obieone's Avatar
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    After having reread this entire thread (and the parents blog and all its attachments for the third time) I guess I too have a little more thinking to do on this issue as well .....

    Its just that I had to believe these parents really really felt they were doing the best/right thing for their child .. its hard for me to accept they agreed to these procedures simply to make their own lives easier without any consideration to long term consequences to Ashley.

    Obieone
    ~ Be the change you wish to see in the world ~ Mahatma Gandi


    " calling all Angels ...... calling all Angels ....walk me through this one .. don't leave me alone .... calling all Angels .... calling all Angels .... we're tryin' and we're hopin' cause we're not sure how ....... this .... goes ..."
    Jane Siberry

  6. #186
    I feel ashamed of myself for having the mindset earlier the parents and doctors were within the realm of the acceptable to do what they did. It wasn't, isn't okay.

    When forming opinion about what constitutes acceptable care, I need to think how I'd feel if such "care" were applied to me. I need to remove the emotional/past experience blinders and utilize logic.

    I was wrong in my initial reaction.

    I'm especially stunned about the choices made for Ashley if her life expectancy is so limited. Given expectations for only single digit longevity, why were surgery and hormones even considered?

    Not only that, if she lives for decades, what benefits will she experience from what was done? I see little, if any, for her.

    As for the doctors, the Hippocratic Oath was not followed. What happened to, "First do no harm ..." ???

    As for the parents' worries about sexual abuse of Ashley, I'd say she's already been harmed. However, it wasn't at the hands of strangers. It was by their own through the doctors who performed drastic surgeries, gave medications designed to prevent her body from growing naturally.

  7. #187
    I've calmed down and my hands are no longer shaking and I no longer feel like I'm about to throw up. I'm still very upset, but at least the physical stuff has subsided.

    I know stuff like this happens, but I think this story has hit me so hard because it is happening in my own backyard. Also, she's is nine, my daughter is nine, and I was eight when injured.

    When I look back on growing up with a disability, the thing that bothers me the most is that everyone thought they knew what was best for me, and so they made decisions for me. Sometimes they were right, but sometimes they were wrong. So wrong. And those memories are terribly painful, even after all these years have passed. I remember I begged and pleaded for them to not do certain things to me, but they did it anyway. What they did is [I]nothing[I] compared to what they've done, and are doing, to Ashley.

    Poor Ashley can't even protest. Not that anyone would listen to her if she could talk...

    It wasn't until I was about 16 when people started to listen to what I had to say.

    Bastards. I'm still angry about it and probably always will be.

    I think that someday Ashley's parents will realize what they've done to their daughter and they will live with horrible guilt for the rest of their lives.

    Although ... my daughter is not disabled, and I am certain I would never allow them to do these things to her. So, maybe the parents will live their lives guilt-free. But maybe with a normal childhood, I would have made the same decision they have made. Who knows. I don't doubt that her parents love her. It's a sad situation.

    I know I'm not very articulate. I wish I could communicate better what I'm trying to say.

    Maybe I missed something, but why have the parents choosen to make this public? Are they hoping to encourage other parents in similar situations to do the same?

  8. #188
    Quote Originally Posted by LaMemChose

    As for the parents' worries about sexual abuse of Ashley, I'd say she's already been harmed. However, it wasn't at the hands of strangers. It was by their own through the doctors who performed drastic surgeries, gave medications designed to prevent her body from growing naturally.
    Good point.

  9. #189
    Suspended Andy's Avatar
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    I dunno, I think there is too much equating the physically disabled with profound mental disability. I myself see no connection to myself to the mentally disabled because I happened to break my back. I believe that congenital physical and mental disabilities are treated differently nowadays also, so I dont see what the outrage is all about. Terry Shaivo anyone?

  10. #190
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    Quote Originally Posted by Shannon
    Maybe I missed something, but why have the parents choosen to make this public? Are they hoping to encourage other parents in similar situations to do the same?
    I think so Shannon. I wondered the same thing myself as it has been several years since she actually had these things done to her. How did they keep it quiet when they did the surgery? Things always leak out at hospitals no matter who or what is being done.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

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