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Thread: Mutilation of daughter as disability treatment

  1. #111
    Parts of this thread are like watching ivy-league professors throw spitballs at each other. People I view as pretty damn sharp are ALL
    acting like they're in a sandbox fight on the playground. I'm just waiting for the "He/She started it!"

    (Please don't put any smiley faces after this post like you are agreeing with me, it's percevied as me "being on your side," and it has caused me
    grief in the past. I'm trying hard to stay objective.)


    Regarding Ashley,

    1) It's done. No one can change it. The media, the public etc., should leave the parents be. I doubt that's happening.

    2) Parents can only make what they perceive to be well-informed decisions based on the information available at that time. If you personally
    hold the parents responsible for not doing more research, consider the mental and emotional state they were in. Now surround them with
    doctors giving them options A or B. Choice A is gloom and doom, the other is the surgery in which the doctors present a case of better
    life for child. (And we don't know how long the doctors' list.) Also, do we know the level of educaton of the parents? Do we know what
    resources they were even aware of? Doctors can appear larger than life, we know better, but do they?

    3) The moral imperative. Does anyone here (PD also) believe the parents and doctors did NOT make Ashley's well being the number one priority
    in making this decision? It's easy to say, "Those damn surgeons just want to play God and see what happens." but unless there is evidence
    damning their charaters, can anyone truly claim othwise?.

    I have more but something else is on my mind. End objective part


    I'll try to keep this as innocous as I can.

    1) It is my belief, that the original poster has put the cause before the people involved, yes even Ashley.
    I come to this conclusion not only because I see sweeping generalizations and leaps in comparison, but because he/she is so passionate about
    his/her own developmentalty-challenged child (as well he/she should) that he/she is bridging the two scenarios. I do not believe that's possible.
    Clinical variance of complications to patient I imagine to be huge, but I will defer to nurse or someone with more medical knowledge for the specifics.

    I also have to ask how knowlegable the poster is on this specific diagnosis other than from the media.

    Also, PD has no obligation to be objective, but "mutilation?" Do you think that word is loaded?
    I envision a baby dropped into a chipper shredder, is that what happened?

    Also, in regard to the appendix being removed, it has always been standard as secondary surgery to remove it when opening up
    the abdominal cavity. It may be the surgeon's own choice now, but this is/was fact.


    Ok, I'm totaaly exhausted. Not everything I want to say, but....

    Oh one more thing, when a person qualifies a person's opinion/belief, they indirectly qualify that person.
    There is no, "I'm saying it without really saying it."
    You are.

    Flame away.

    J.
    Last edited by NoDecafPlz; 01-13-2007 at 09:45 AM.
    And the truth shall set you free.

  2. #112
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    Quote Originally Posted by antiquity
    Hi DD, of course lots of AB's have all types of surgery everyday but with them, it's a choice, their choice. An AB wouldn't be forced to undergo the removal of an appendix, uterus or breast buds without their consent. Even in the case of AB minors, the age of consent for medical procedures is 14.

    The last time something even remotely similar to this took place was during WWII when the Nazi's and Japanese experimented upon the Jews and Chinese respectively without their consent.

    I honestly didn't think this was legal.
    I really understand this statement. But I also have to wonder what it was like to walk a few days in the shoes of these parents. I would be such a hard decision to make especially if you truly think you are doing what is best for your children.

    The child was not able to give consent so who's responsibility would it be to step in and do what is best for her situation? I believe the parents consulted physicians and tried to make the best decision they could.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  3. #113
    Ashley's treatment began around 4 years ago - so why all the hoopla now?

    Two reasons 1. Her doctors published an article in a major medical journal in October in an attempt to present her case as a standard of care for other children like Ashey. 2. Ashley's parents began a website where they explained the reasoning behind their choices around Ashley's treatment.

    Both of these actions open up the family and the medical treatment team to public comment. The family could have refused to give permission for her case to be so widely disseminated and they could have kept quiet themselves, but they did not.

    Ashley's treatment regime will establish a precedent. Already other parents are asking for similar treatment for their child. Whether or not Ashley's treatment will be considered an accepted precedent for the future or an error in judgement to be condemned by the medical establishment as a whole is yet to be determined.

    I don't condem Ashley's parents for coming up with this idea, as I have been quoted publicly in the press I had similar thoughts when my son was young. I condemn the process that allowed this to go forward and the society that does not provide the supports needed so that ideas such as these are never imagined.

    My fears about this process have escalated after talking to many people about it. I don't worry as much about the removal of unnecessary ears or legs, but instead on the age of the patient.

    The discussion of Ashley's treatment started when she was 4 according to her parents but did not begin until she was six. And the treatment process in not an instantaneous success, so it was only when she was 8 or so that the fruits of the doctors labors could be assessed.

    So if this treatment regime is accepted - will it begin in children younger than Ashley? Will it be given to 3 year olds? 6 month olds?

    I know that childen can demonstrate dramatic improvement that is wholly unexpected by the medical establishment. My child is a child who was not expected to be potty trainable, to be able to talk, or to have any self-help skills. Little evidence that the doctors were wrong was evidenced until he was 4. His condition until 4 was considered static. But something changed - unknown what - but perhaps a damaged neurotransmitter suddenly regenerated - and in one summer developmentally he jumped years in growth - physically and cognitively. What if this had been available to me before his leap in development? I can't honestly say for sure, but I'd like to think I would have considered it and then decided no.

    The source of Ashley's specific disability is unknown. It is not getting worse - it is static. What happens if through the wonders of medical science in 10 years the source of Ashley's brain malfunction is discovered and she suddenly has abilities that do allow her to assess her own condition as a person of more typical intelligence? What if her brain, like my son's brain suddenly gets in gear and she begins to change?

    There are adults who resemble Ashley in presentation who have been discovered through the use of technology to have far more intelligence than has ever been accessed before. There are people who communicate via computer using eye blinks. This notion that Ashley has the cognitive function of a three month old is based upon observation of her physcal behaviors. He physical ability need not match her cognitive ability.

    The reality is that we really do nothing but conjecture what the mental capabilities of any three month old are. As three month olds cannot communicate very effectively we make assumptions about what they are communicating.

    But then again, what if none of this happens, doesn't Ashley still deserve to be loved and respected as the person she is and not the person her parents and society wished she would be?

  4. #114
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    Quote Originally Posted by chick
    Every time opinions that were criticized bruised someone's self esteem and caused them to question their own integrity... well, that isn't a job for mere members to fix. But geez, it sure gets tiresome to repeatedly have threads degenerate to personal attacks . Real Old.
    It seems that threads can be rationally discussed until you show up in one. You intentionally pick 10 words out of a post and blend them until it suits what you seem to "think" just to make some inflated point that makes no sense. You also attempt to make those you have no respect for look less than intelligent. Perhaps you were the one "internalizing" my foster care comment. I was only using it as an example here but obviously you felt it needed to be addressed in an entire paragraph. The real issue here is there are children abused across this country and world daily...I do not think these parents are guilty of any kind of mutilation. They did what in their eyes was best.

    We never agree and probably will never agree simply because I am different than you. That is fine. I dont have to. The one time I did attempt to agree with Scorpion, he had to make a degrading comment. So I usually refrain from even acknowledging both of you.

    It is okay for you to "dig" at others but when someone "spits" back, we are internalizing your comments.... Puhhhleeeesssseeee

    You internalize "everything" otherwise you would not have taken a 10 word sentence out of 10 pages and addressed it in a paragraph to attempt to discredit me. It is becoming "predictable" LOL

    I can appreciate that you disagree but I don't think the opinions of those who oppose you/scorpion are disgusting... As Obi pointed out, we are all seeing this from different circumstances.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  5. #115
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    Quote Originally Posted by Leif
    Okay then, this is also very strange. When it comes to a possible abuse later in life why would this be an argument at all? Most likely the parents will live much longer than the kid due to her problems. Then if the parents are supposed to take care of her themselves why would this be necessary? Would it be necessary so that the parents themselves will not abuse her? This whole argument fails due to this.
    Was this quoted in the medical journal as a reason for the surgery? I am curious as I read that the uterus was removed for the comfort of the child in regards to the monthly menses (cramps and blood and skin breakdown) not the probablility for abuse later in life. I do know several people who have underwent this same surgery for those reasons and are able bodied. The breast buds were removed because there was a strong family history of breast cancer and not only to limit the size. There are several people here in town that have had mastectomies for this very reason because usually if your mother or aunt has breast cancer (same with prostate) you are more likely to get it also. If I am not mistaken that is why they encourage people to get mammograms.

    Would a colostomy for a para/quad not fit this same comfort argument? Those who elect can elect to have a colostomy to relieve accidents, skin breakdowns, and many other preventable problems. The only difference is they are able to consent. I realize Ashley is not able to consent but who is the more qualified to offer consent for her? According to the law, it is the parents barring an abuse situation.

    I am not a big fan of the hormone treatment but again I am not in the parents shoes and very glad that I am not. I cannot understand why they would want to bombard her with hormone treatment other than to limit her size. I am not sure what I would do in the situation other than to do what I "thought" was best for my child.

    I can also understand the reasons for taking the appendix as Joe is right they usually do this in addition to any major abdominal surgery. A hospital is not allowed to bill for the removal of an appendix at the same time as another major abdominal surgery which hysterectomy would fall into that category. I am not sure about the ovaries unless there was a family history of ovarian cancer. Again that may have something to do with the hormone treatment....

    I still think they (the parents) went through many agonizing decisions to do this....
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  6. #116
    Moderator Obieone's Avatar
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    PDNemisis you said:

    " The source of Ashley's specific disability is unknown. It is not getting worse - it is static. What happens if through the wonders of medical science in 10 years the source of Ashley's brain malfunction is discovered and she suddenly has abilities that do allow her to assess her own condition as a person of more typical intelligence? What if her brain, like my son's brain suddenly gets in gear and she begins to change?"

    This exactly substantiates my point .... (and I know I am still presuming to know what these parents may have been thinking) ...... but there is little doubt in my mind that this very thought crossed their minds and they chose to proceed with these "treatments" any way .... if what you predict in the above statement did come true .... that would be alot to live with .... I believe it took a fair bit of courage to make their decisions.

    I wonder if the words we choose in a discussion like this are always deliberate ... they can be such powerful tools while at the same time such hurtful weapons ..... I maintain if we are truly interested in being understood we would absolutely be more discriminating in our choice of words so that no one feels discounted and everyone feels respected...and how is it even possible to talk about a subject like this without drawing on our own life experiences ... I don't believe it is possible ....

    The whole issue of judgment is just a tough one for me .... is having an opinion the same as being judgmental?? .... 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 ...

    Obieone
    And for the record I don't consider my opinions wish-washy at all .... 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!
    ~ 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

  7. #117
    I took the comments on the views on the Ashley treatment to heart. I wasn't entirely logical because I used my frame of reference: my early life and the opinions of others about it.

    As an adult I've learned there were people who thought braces and orthopaedic shoes were unnecessary because I wouldn't be running anyway. (Oh, but I did run in my own way.) There were people who thought I gained far too little for the hell of a failed tendon transfer. I learned there were people who didn't understand my parents taking extended lunch hours and time off work for every other day PT for me. They questioned the home therapy even more.

    My parents were judged for some of the choices they made in regard to my care. I'm feeling especially sensitive about that these days given I recently met a woman with cerebral palsy so slight I didn't know she was a cp-er until told. Hell, she doesn't even limp or have obvious hand problems or uneasy movement. Yet, she is far more diabled than I am because she was raised as an emotional crip due to cp.

    My parents were aggressive with my care, pursued it to no end. They searched and researched, always looking for ways to make my life better, easier, more enjoyable, less painful. They found ways to help me be stronger, more independent.

    In thinking about Ashley and trying to remove emotion, I do have concerns about the surgeries. The only thing I can relate to this, and it is so small by comparison, is when I broke my foot/ankle/lower leg. I couldn't even get a doctor to take an xray for a month because "I wasn't using that leg and wasn't it 'kinda funny' looking anyway?"

    I wasn't walking on it, had cp, an SCI, so why worry about checking for broken bones? That happened in the e.r. of a major hospital. When I pushed the doctor, she checked with the head of the e.r. and the answer was still no.

    Just because I'm dis, it did not mean it was okay to ignore my broken bones, to tell me I didn't need those bones set anyway.

    Yes, it does trouble me that Ashley had all those surgeries, all the drugs. It bothers me more than Ashley lives with such a severe cognitive impairment. I have long thought I'd much rather have the body I have and retain my brain than to have a perfect body and a disabled mind.

    I have no answers. I do wish the family peace, Ashley joy wherever and however it may be found.

  8. #118
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    Quote Originally Posted by darkeyed_daisy
    Was this quoted in the medical journal as a reason for the surgery? I am curious as I read that the uterus was removed for the comfort of the child in regards to the monthly menses (cramps and blood and skin breakdown) not the probablility for abuse later in life. I do know several people who have underwent this same surgery for those reasons and are able bodied. The breast buds were removed because there was a strong family history of breast cancer and not only to limit the size. There are several people here in town that have had mastectomies for this very reason because usually if your mother or aunt has breast cancer (same with prostate) you are more likely to get it also. If I am not mistaken that is why they encourage people to get mammograms.

    Would a colostomy for a para/quad not fit this same comfort argument? Those who elect can elect to have a colostomy to relieve accidents, skin breakdowns, and many other preventable problems. The only difference is they are able to consent. I realize Ashley is not able to consent but who is the more qualified to offer consent for her? According to the law, it is the parents barring an abuse situation.

    I am not a big fan of the hormone treatment but again I am not in the parents shoes and very glad that I am not. I cannot understand why they would want to bombard her with hormone treatment other than to limit her size. I am not sure what I would do in the situation other than to do what I "thought" was best for my child.

    I can also understand the reasons for taking the appendix as Joe is right they usually do this in addition to any major abdominal surgery. A hospital is not allowed to bill for the removal of an appendix at the same time as another major abdominal surgery which hysterectomy would fall into that category. I am not sure about the ovaries unless there was a family history of ovarian cancer. Again that may have something to do with the hormone treatment....

    I still think they (the parents) went through many agonizing decisions to do this....
    Hello Very Darkeyed Daisy’

    My comments were in general directed to abuse wherever it exists although aimed at this situation as well, not to this situation specifically so much although this situation with this kid is known in media and thereby is very valid as well. And this specific comment of mine was written as a comment to a post from “gun-lover with no answers” LaMem (yeah right) .

    My comment you refer to other than to put the whole bunch in jail was also due to LaMem comments when it came to a possible future abuse which to me would seem impossible due to what I commented and thereby rule out any surgeries to avoid a possible abuse as such. As for the medical journal I don’t have it, and if such a medical journal was published it would have been another and a clear abuse and also a breach of law in most places.

    As for able bodies or for that matter people that can make their own decisions they can do what they might please to do for what I am concerned, a side note; I can also see now that a new way actually originated from tattoos, trough piercing is now very popular in America and that is to do scarring. Fine by me if some wants it but to draw parallels to a situation in discussion here would be even more bizarre.

    As for breast buds. It is laughable thus those hormones and genes would not probably kick in or come into play as for a possible breast cancer long time after this person would have been dead due to other causes.

    As for colostomy, did "she" need it, hypothetically as you are hinting?

    And again, as for the parents, put them in jail. The kid for example could be adopt to India or Bangladesh where she could get real good foster parents more concerned of the kiddo than her real parents shows in their diffuse minds here along with some doctors which are likewise diffuse as their original profession should be.

    All those ideas are quite worrisome to me, like I said; over here any that tried something like that would have been thrown into the slammer, head first. And this can happen at your place? I am stunned and this is OK by some of you guys? But to do research on some cells are not? It’s strange Daisy, very strange indeed.


    The parents and the kid need help, other than this stuff.

    No attack on you here tough other than to say a couple of weeks in the slammer also could do some good in your thinking process, this coming from a man that supports ESC research.

    Last edited by Leif; 01-13-2007 at 02:27 PM.

  9. #119
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    Quote Originally Posted by Leif
    No attack on you here tough other than to say a couple of weeks in the slammer also could do some good in your thinking process, this coming from a man that supports ESC research.

    I actually can understand your views on this and never considered it an attack. I also am all for ESC research. I am also for comfort of child/adult. I guess my thing with the uterus is if its not going to be used to have children...yank it out, it causes nothing but problems. Of course, you would have no experience having the monthly menses...LOL I do not understand why they would opt for the hormone treatment as that is a little far fetched. None the less though, I think they care about their daughter.

    I wouldnt mind a stay in jail if it was a psychiatric facility and gave really good relaxing drugs...LOL Some days I feel like I could benefit from a stay in a padded room anyway.

    I was thinking of the situation as if it were my own daughter. I dont know what I would do if faced with a decision such as this. I would want her as comfortable as possible and able to live a life as comfortable and stimulating as she could live.

    I do support the parents though as I think they know the child better than a goverment agency or anyone else for that matter. I think mutilation is a harsh term as they did not intend to mutilate. When I think of mutilation, I think of genital mutilation which does happen in some countries....

    Who is qualified to make a decision regarding this child since she cant think or decide what is best for her own body?

    I guess if I were ever to become brain injured or unable to make my own decisions, I would want the closest person to me to be responsible for making those decisions as opposed to someone with an agenda. If it meant losing a few organs to make things easier for whoever was taking care of me then I would be okay with it. I do have an advanced directive so I dont where this will ever be a problem though.
    Last edited by darkeyed_daisy; 01-13-2007 at 07:19 PM.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  10. #120
    Leif, I can't resist in "LOL" at the fact you call for the imprisonment and physical removal of people who've expressed their thoughts on here, with no problem by people, but simply calling those thoughts "disgusting" warrants childish attacks from those very same people.

    Very funny. At least a funny, good enough for me to post.

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