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Thread: Mutilation of daughter as disability treatment

  1. #191
    They waited to publish their blog until the medical journal was out. It came out in October and so it wasn't widely read until November. It started to get negative feedback from the medical community straight away. As soon as the disability community found out about they too started to blog about it.

    The blog states as its reason for being: "we decided to share our thoughts and experience for two purposes: first, to help families who might bring similar benefits to their bedridden “Pillow Angels”; second, to address some misconceptions about the treatment and our motives for undertaking it."

  2. #192
    Ya, know, I stayed away from this as it is way too painful comming fron loosing our own child and myself having everything I have faced(including the lovely "gift" of SCI).
    What can you say or do? Really nothing, I just know my thoughts on this. Even the Shaivo case hits extremely close to home for me so, I have been avoiding "cases" like this but they are so touching to me, very, very strongly. I will only say, right or wrong, we don't decide that. I fell though it was wrong and there is always more to the story then "we" see/hear/read.
    I just could not phathom(sp) doing this to my child for ANY reason.
    This to me is such a devastating case but I am not the one living in it and having to deal with the consequences, right or wrong, good or bad.

  3. #193
    Senior Member kate's Avatar
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    how totally strange

    I know one of the doctors named at the top of this thread. I mean, like, I've known him for years, because he's my daughter's doctor. He was and is a blessing to her--knowledgeable about her particular condition, kind and patient, willing to spend whatever time and energy she required.

    She spent a few hard years trying to be understood by a couple of other doctors--finally somebody recommended him, and every interaction we've ever had with him was positive.

    I have no opinion about the decision these parents made, but I thought you'd like to know that at least one of the people involved is no monster. He's an old friend and a good doctor.

  4. #194
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    Quote Originally Posted by darkeyed_daisy
    Well given her age...I think India/Bangladesh would be her last choice of places to go. I keep forgeting she is over the age of consent now so I guess I wont have to worry about making a decision like this.

    I still support Ashleys parents though.

    I did mention colostomy in a previous in a previous post. What is the difference in removing the uterus, removing bowel for a colostomy, or bladder treatment such as a mitronoff in a mentally disabled child? Many children here have them. The mitronoff was invented to help children (I may be wrong here). They do colostomies and bladder procedures for comfort and to treat accidents. Explain the difference.

    I already said that I was hesitant to agree that the hormonal treatment was the right choice. I dont think I would have opted for the hormone treatment/breast removal but dont know for sure as I dont know Ashley.
    India or Bangladesh would be a very good option for the kid as I see it, they have good family ties and anything would do to separate her by a long distance from her parents.

    To remove the uterus for avoiding future problems like cervical cancer is also silly, any should do it then. Also, now there is a good vaccine (link) for this cancer type which should be given to girls before puberty starts which if she got it would probably made it so that she would never have received such a cancer type. Why did not the parents wait for this vaccine? And what about other potential types of cancer one can get, should organs or body parts be removed or chopped off to avoid this as well?

    As for colostomy it has noting to do with this, but if some would have given a tip to the parents about it, I’m sure her parents would do this as well.

    I am very surprised about all this, not the parent’s itself so much tough because there are all kinds of weird parents out there. What I am more surprised about is that I thought that this was not legal; also, does not this hospital have an ethical board or committee? Where were they in all this? I am really surprised by the docs and people involved here. They should have better things to do than surgical mutilation of kids. And to say this is for the kid’s better health is also wrong; I guess to perform those procedures involved she must have had at least three heavy anaesthesias, which alone would put her more in risk of dying than future possible diseases etc. would. Maybe that was the hidden goals by the parents as well, because I don’t trust them. Also, say for the other two kids, take the boy for example, down the road he is in risk of developing testicle cancer like many are, due to this are the parents planning on removing his testicles? Or maybe they already have? I think a child welfare office should take a better look on the parents here.

    The father in discussion here must also be the biggest wimp here on earth if he can’t lift this little girl as she would still have been without all those procedures from the TV chair to get outside of the house… An example; the other day I watched a documentary about a couple from my neighbour county here at home. The married couple was approximately 35-40 years old I would say. Anyway, the man in the relationship got a serious dementia (a type of Alzheimer) some years ago and rapidly he got into a cognitive situation. He become totally paralyzed and could not communicate at all because his brain was shrinking. Still the woman here did not want to put him in a care place but instead wanted to take care of him herself cause as she said she loved him regardless. This woman was a hard nail I’ll tell you. Not only did she take him outside, and to move him around from bed (their bed), a chair or the wheecahir she just lifted him herself like the most common thing here on earth. Of course he had lost a lot of weight but still he was tall and difficult to handle/lift. She even took him on long haul trips, one trip was to Asia to visit friends recently, and there on the airplane the airplane crew (several of them) was thinking how to get him into the plain and to his seat, the same when leaving the airplanes etc. This woman then said to the airplane crew “get out of my way”, she then just lifted him herself and walked by those airplane crew people like nothing and placed him in a comfortable position. She was amazing, I think this lazy father of this kid in discussion here should go and visit this woman and learn how to take care of the loved ones, I am sure she can teach him a lot of stuff, and here I don’t mean lifting techniques.

    It is also funny to see that the father here says that God thinks we should give this kid such a good quality of life as possible and also use all means to do so. Well, I’m not sure about this; I think they could have misunderstood God a tad here. I think the father here should leave God out of this and concentrate more on himself.
    Last edited by Leif; 01-16-2007 at 12:52 PM.

  5. #195
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    Quote Originally Posted by chick
    You guys are MY amusement, and my amusement alone, until I decide I'm bored. Selfish bugger, ain't I. I usually ignore, but Leif's comments were funny enough for me to post again and Daisy's revelation was truly dumbfounding. The ridiculousness of it all triggered me to have a great laugh. Eh, so sue me...or lock me up with Leif. We might even escape on that submarine to have our latte while watching brown bears mate in that frozen barren land (I now can't remember the name of). If anyone else finds any of us ridiculous, as I'm sure many do, the onus is on them. I do not have the Pied Piper's skillz
    Glad to help, but my comment was very serious and I meant it. Also glad many here has some common sense after all. As for the submarine trip to the Kamchatka Peninsula, we really have to have that project going, one theme on the trip could be to sentence jail time for some members here, well if the morning grumpiness ain’t to much of a burden that is

  6. #196
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    Quote Originally Posted by antiquity
    It's interesting that the people who are the most opposed to the Ashley Treatment (myself, lynnifer, Cspanos) are the few members here who acquired their injuries as children and so have experienced life as a disabled child and one person who actually has a disabled child.

    Everyone else seems to be viewing the disabled child in this equation as a non entity, as a thing without human rights or at least who's rights are secondary to those of others. This is fairly typical and unfortunately, quite common.
    What are you talking about?

  7. #197
    Senior Member Zeus's Avatar
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    Quote Originally Posted by betheny
    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.
    As has been discussed above Ashley has already been traumatised by blood. This is completely inconsistent with a 3-month-old baby. That's not to say I think Ashley has significant higher reasoning skills, but it's another inconsistency nonetheless.

    I think Antiquity may be on to something. I think those of us injured as children have a different perspective, although others like Chick, Scorpion, Leif and RehabRhino reached similar conclusions too. I'll try and write more on this tomorrow.

    It seems to me there's an unwritten pecking order. Children, by definition, have fewer rights than adults. Disabled children struggle even greater to be heard. Add a significant cognitive impairment into the mix and sometimes people forget you're human entirely.

    Looking at the parents' website once more, they proclaim "Ashley’s biggest challenges are discomfort and boredom; all other considerations in this discussion take a back seat to these central challenges". I fail to see how they did anything to mitigate these issues.

    How did keeping Ashley a foot shorter than she otherwise would have been increase her comfort? All it did is make it easier to care for her. Yes, this is a benefit, but one to Ashley's parents - not her. Rather than augmenting her body, her parents should have investment more time into exploring PCA services and assistive-equipment like hoists.

    I'm also disturbed by their constant references to "pillow angels" - to me, they almost dehumanise her. These are not pillow angels, they are human girls and boys.

    As a litmus-test, I told my parents about Ashley. At the age of 7 they became my sole carers and to this day provide the bulk of my care. My sister and I are their lives. Neither parent has been to university, and my mother only has a primary school education. To say they were horrified by the Ashley treatment is an understatement - and they pretty much cared for an Ashley that grew to 5'9" and at one point weighed 260 lbs. A hoist is all it took...

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

  8. #198
    Kate, good people sometimes do horrendous things. People we consider the worst monsters of history have had people who loved and respected them.

    Doctors see a disabled body and wonder how they can fix it? That is the primary basis for what is called the medical model of disability. Disability is an aberration to be eliminated. The idea of the medical model is slowy loosing a stranglehold over the lives of people with disabilities. What replaces it is other models- the social model and the civil rights model to name two.

    In both the social model and the civil rights model the day to day life of a person with a disability is considered most impacted not by the limitations of their body, but by the limitation of a society that has refused to provide the needed accommodations and services required to live a good life within a disabled body. This includes funding for research, medicine, and medical care in addition to ramps, TTYs, and Braille signs.

  9. #199
    Senior Member kate's Avatar
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    Quote Originally Posted by PDnemesis

    Doctors see a disabled body and wonder how they can fix it? That is the primary basis for what is called the medical model of disability. Disability is an aberration to be eliminated.
    Not my experience with this particular doctor, at least as I saw him with one particular patient.

  10. #200
    My disability is an aberration I wish to see eliminated. I'm okay with that LOL. Given the choice I'd rather have my body back than all the accomodations in the world. So far I haven't been given the choice tho, so I like my nice wheelchair.

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