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Thread: Mutilation of daughter as disability treatment

  1. #101
    Moderator Obieone's Avatar
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    You see this is exactly the reason I tend to stay away from passionate discussions such as this ...... I hate the way they degenerate into "the black hole" of disrespect! However I simply cannot be silent here ......If I have learned nothing else in my 52 short years it is this ..... things are rarely as they "seem" to be .. and its so humbling to be wrong .... I know .... I have been wrong ... many many times before ...

    WE DO NOT KNOW THESE PEOPLE .... however we know they are parents ... I am a parent ... parents generally LOVE their children (unless they(the parents) are mentally challenged or otherwise damaged in some way) ... these parents have made a number of decisions for their child ... we may or may not agree with their decisions but THEY live with those decisions not us ..... we can have an opinion but I do not believe we are entitled to any judgment because we do not live their lives ... I've always wondered (and I mean this in all sincerity) why are we so afraid to allow judgment to come in its own time in its own way and without our pitiful help ... IF there is judging to be done ... it will be done.... with or without us .... and for the record this is not God talk ... I believe the Universe will correct us when we do the wrong thing one way or another .... it doesn't need any help from us .... we are ALL in process .... making our own mistakes (or not) ongoing ... so what makes any of us think we know better I just don't get it .....

    These debates are hard because they are so scary ... and there but for the grace of god go any of us .... there is no way we can make a blanket statement about a situation like Ashleys for everyone .. because as with sci every "injury" is unique and each situation so emotionally charged. This discussion has been very clinical in its description of procedures done to this child ... but for me the mitigating factor has been ..... and I'm taking a leap of faith here ... they were not made in a vaccum .. they were made out of LOVE .. hoping against hope that decision made was the right one .. FOR THEM ... maybe not the one we would have made but FOR THEM ..... let it be ... let it be ...

    Obieone
    There is nothing "disgusting" about our opinions because we don't agree ... they are just different ... we all deserve to be respected for our opinions ... even when they are not shared .... my husbands injury has taught me humility I never knew before and because of this I have no judgment of these parents .... absolutely none ....
    ~ 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

  2. #102
    And I thought sjeans comment would be the last. I had written a lengthy post this morning but decided against posting it.

    Arg, as for the degeneration of this topic, I figured it was coming. There was name calling on the 2nd page of this thread, prior to posts #30 and #32 which is why I asked folks to keep it above board.

    Anyway, here's what I was going to say.

    I think a lot of our differences are due to perspective.

    Some of us are speaking from the perspective of a loving parent faced with a difficult decision regarding the best course of action for a disabled child and are assuming that all other parents faced with this issue are equally capable of making purely selfless decisions.

    Some have relatives who have institutionalized their disabled children because they could no longer care for them and have come to the conclusion that physically mutilating the disabled child in order to lessen the caregivers burden is acceptable and humane or at the least, the better of two evils.

    Some are speaking from the perspective of a parent of a disabled child who understands that their childs disability renders them worthless in an ableist society. Because of this, their children are perceived as non human which makes them vulnerable to victimization and objectification by the medical establishment. As advocates, these parents fight daily battles to ensure that the rights of their children are upheld and respected.

    Others are speaking from the perspective of the disabled child who was subjected to degrading and objectifying treatment and/or had parents who outwardly appeared loving and concerned (primarily because of the misconception that only a parent who loved their disabled child would keep him, otherwise he/she would have been institutionalized) but regularly made decisions for their own benefit rather than the benefit of their children. While it is true that parents often put the needs of their children before their own, it is also true that many don't.

    I think it's important for those of us with disabilities to remember that many of the questionable things done "for our own good" such as the forced sterilizations, not only occured in 40's, but took place within the past few decades and are still taking place today.

    I'm not sure what the abandonment of medical procedures that were common in the 70's/80's has to do with Ashley's case. I wouldn't put something like tendon transfer or the mitronoff in the medical experimentation category. Those procedures were FDA approved after rigorous testing for safety and efficacy and the benefits were shown to outweigh the risks of the surgery.

    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. And before someone says that parents enroll disabled children into trials all the time without their consent, it's important to realize that there's animal data to support those treatments. In Ashley's case, has anyone determined the outcome and long term effects of the "Ashley Treatment" in animal models first? If not, is Ashley doubling as both the animal and human subject?

    I said nothing in my post suggesting that I support the institutionalization of Ashley. I am against the institutionalization of the disabled as well as the abuse and mutilation of their bodies by the medical establishment and caregivers.

    PDnemesis, it's funny because I thought about the quote you posted in #73 earlier. One thing I can be certain of is we'll scream bloody murder when folks start suggesting that the arms and legs of quads be removed to make them lighter and easier to lift, oh and more comfortable too. We'll be begging for the intervention of disabled rights activists then.

    Regarding judgements, we're all passing judgement and viewing this situation through our own experiences.
    Last edited by antiquity; 01-13-2007 at 03:02 AM.

  3. #103
    Quote Originally Posted by Scorpion
    Oh, geeze, somebody call the Waaaambulance! C'mon, Bethany, I didn't call anyone names or call you or anyone else "disgusting". I don't think chick did either. Read my post again. I said "disgisting" in reference to the apparent ease of which so many people in this thread support the parents, almost without any question or hesitation. That disgusts me, and it's not simply because of someone disagreeing with me.

    Wait, I did say some people were "big babies" so I guess I did resort to name-calling. Oh well.
    I take umbrage at your insistence that people are supporting the parents without question or hesitation. I have kids, I've raised other people's kids, and I think this is a haunting situation that they are in.

    Parenthood is hard. Parenting Ashley is harder. Just because I'm not judging her parents doesn't mean I blithely support mutilation of small children. I had a difficult time having my infant son circumcised LOL.

    It's like you can't wrap your brain around the concept of "not judging". If we don't judge those parents harshly, to you and chick we're guilty of some disgusting support of the cruel parents.

    In fact, no. We discussed it and weighed it and found it was not our place to judge or condemn. We are not in those parent's shoes and we're grateful. We think the evidence indicates that the parents are doing the best they can in the circumstances.

    And yes, sometimes I internalize such generalizations. I think most people probably do. At one time I considered pointing out every time chick internalized but it wasn't worth the fight...it was fairly frequent. I think it is a human reaction.

    I think antiquity is right, it is very much a matter of perspective. The parents here are all reserving judgment. We have a different set of life experiences and in this case the sum of the experiences equals a completely different answer.

  4. #104
    Senior Member Scorpion's Avatar
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    Quote Originally Posted by betheny
    In fact, no. We discussed it and weighed it and found it was not our place to judge or condemn. We are not in those parent's shoes and we're grateful. We think the evidence indicates that the parents are doing the best they can in the circumstances.
    Who is this "we" you keep referring to? So, the "majority" rules and those of us who dissent and choose to judge despite the decision of the "we" of this thread (or any other) shouldn't post? Mob-mentality once again rears its ugly head here at CareCure.

    I judge Ashley's parents. I judge them harshly. And yes, I judge those who let them slide because of some wishy-washy "we aren't in their shoes" mentality.

    It's funny how some of you don't judge parents who subject their disabled child to medical experiments for the sake of convenience but you're quick to judge chick and me for thinking your opinions and the parents' actions are disgusting--all the while there are others who have posted here sharing views similar to ours, yet you don't whine about them.

    As for the rest of your passive-agressive post, I have no desire to bother commenting on it. You're content on your high-horse, and I don't need to try and knock you off it.

    I'm done.

  5. #105
    We = the ones that weren't comfortable judging, the ones not sure the Ashley treatment is worthy of condemnation.

    I still don't understand why opinions differing from your own are qualified as disgusting. Sometimes people have different opinions and they are simply "different".

    LOL. Passive-aggressive isn't a term frequently applied to me. I usually refrain from being a full-on bitch, or not. Not a lot of middle ground.

  6. #106
    LOL this has become ridiculous.

    Just by repeating "we weren't judging", doesn't make it so. Repeating it may make one feel better or believe in it the more it's repeated, but everyone has made judgment here. Some "non-judger's" being the biggest culprits.

    Good post Antiquity, Obie, Scorp.
    Obie, some thoughts below re:
    Quote Originally Posted by Obieone
    There is nothing "disgusting" about our opinions because we don't agree ... they are just different ... we all deserve to be respected for our opinions ... even when they are not shared .... my husbands injury has taught me humility I never knew before and because of this I have no judgment of these parents .... absolutely none ....
    Obie, nothing you've expressed have been disgusting.
    However, some other opinions/comments here have been.

    Opinions are not simply about being different, nor do they automatically deserve respect. Individuals can be respected as a person, while their particular opinions seen as "disgusting" or not worthy of respect. Often, for me, people's opinions can be a reflection of the person, so the two are not necessarily mutually exclusive.

    Opinions, such as those expressed by Finkle can be at times disgusting (tho IMO, he does so mostly to instigate/bait). If someone advocates and supports acts committed by Hitler, I may find that support disgusting. If an adult person expresses interest in and speaks of his pleasures in having sex with babies, I will not hesitate to find it disgusting. I may find many other opinions disgusting. This is not simply about having different opinions. These are not opinions deserving of respect. Others may choose to respect them. I choose not to.

    People may find nothing disgusting about the opinions here, simply "different", but why does the same rule not apply when one expresses an opinion about others' opinions being disgusting? If people do not like or appreciate the use of the word "disgusting", while claiming all opinions as valid and worthy of respect, what makes an opinion which includes the word "disgusting" wrong? Is it not simply "different"? Would "distasteful" be more acceptable? What are the parameters for opinions being acceptable and measured as simply different?

    Direct attacks are acceptable to some mods here, as we've had the benefit of reading, but use of "disgusting" is inappropriate because...?

    Maybe this criticism of an opinion was offensive to some, but direct personal attacks not so (as long as it's not directed at them but at members they don;t care for?)? Many opinions here were offensive....Offensive enough to warrant the term "disgusting". To have forum order and discussion, rules may need to be clear and objective, and not based upon the personal emotional whim of mods. Actually, members are often reminded to "attack the opinion/post, not the poster" (or somethin like that). Finding opinions disgusting meets this rule.

    Basically, this is just becoming a circle jerk and really is nothing more than some people not liking certain members and therefore their opinions, and because for whatever reason, they've claimed this one word to start this unnecessary flaming . It is a choice. Seriously, it's just a different opinion. Albeit a different opinion that finds some other opinions DISGUSTING. Don't own someone else's opinion of an opinion.

    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.

  7. #107
    Oh, just saw this:
    Quote Originally Posted by betheny
    It's like you can't wrap your brain around the concept of "not judging". If we don't judge those parents harshly, to you and chick we're guilty of some disgusting support of the cruel parents.
    Don't bother including me here. My comments have very little to do with judging or condemning the parents.
    And yes, sometimes I internalize such generalizations. I think most people probably do. At one time I considered pointing out every time chick internalized but it wasn't worth the fight...it was fairly frequent. I think it is a human reaction.
    LOL. Just simply LOL.

    ok, you all carry on with this nonsense. In done too. Wasted enough time.

  8. #108
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    I can judge, no problem; I still think the parents should go to jail, along with the accessory posters in this thread.

  9. #109
    I find it disturbing. It's like modding your ride. The whole 'she's getting too heavy' argument is fatuous when things like lifts and slings exist.

    Why not keep trying to shave a few extra pounds off here and there in the same way some of us do with our chairs?

    Feet? Don't need those fuckers.
    Ears? You can hear without the external appendages and hats would fit sooooooo much better.
    Tongue? Come on, she can't speak and it just gets in the way when she's fed

    From the http://news.bbc.co.uk/1/hi/world/americas/6229799.stm article:

    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."

    Oh I see..........so because she allegedly can't comprehend dignity or indignity she's not entitled to the former? Why dress her then?

    I don't like judging either but I am doing so here because the whole premise makes me uncomfortable. I agree with the commentator who said that it's an extreme response to the financial difficulties faced by the families of severely disabled people.
    C5/6 incomplete

    "I assume you all have guns and crack....."

  10. #110
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    Quote Originally Posted by LaMemChose
    Ashley is cognitively three months old. The parents say they made the choice for the surgery and medication because they don't want her possibly abused later in life.
    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.

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