Announcement

Collapse
No announcement yet.

Mutilation of daughter as disability treatment

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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.

    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.

    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?

    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

    Comment


      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

      Comment


        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.

        Comment


          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; 14 Jan 2007, 6:23 AM. Reason: Changed "We" to "You" as posters here were actually better informed.
          And the truth shall set you free.

          Comment


            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

            Comment


              Originally posted by Tiger Racing
              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?
              This doctor was the director of Sydney's leading SCI clinic. The next closest clinic of similar standing would be in Brisbane or Melbourne - a 1000 km trip! Also, he knew SCI and the related complications better than any physician in Sydney. My parents took all of his advice concerning my health to heart and simply ignored his amateur social work.

              Originally posted by Tiger Racing
              Ashley's parents have said that they want other parents to know about this "treatment", so this is a very, valid concern.
              I believe Ashley's doctors have also published a journal article to specifically discuss the "Ashley Treatment" as a new standard of care. This concerns me more than anything.

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

              Comment


                Chris,
                Yes, I raised the issue of potential, our (SCI community) beliefs and attitudes about disabilities, and social implications, especially as it relates to this one specific case. I think these are important issues to talk about. Particularly, the issues often discussed on CC - Cure, Advocacy, Public perception and participation, scientific research and need to greater evidence-based research/practice/policy-making, etc., are all intimately intertwining disability issues and very much related to the issues in this one case.

                I'll follow-up more in a bit, but just wanted to post this to you first.

                Comment


                  Originally posted by chick
                  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?
                  Technically speaking, the most mature thing to do when others supposedly lower themselves in your estimation is to ignore them. You have zero credibility when it comes to calling others "childish" based on your own responses.

                  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
                  Again, that's bullspit. Any number of posters have addressed quite a few of the points that you've made. I would post specifics, but you would just ignore them or attempt to distract from the point with more banter.

                  "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.
                  I don't believe you. I don't believe that you actually wondered if Daisy was brain damaged. You are just being snarky and sarcastic.

                  Calling me a "bitch" is more acceptable than regarding an opinion as "disgusting", I see.
                  FTR, I didn't call you a bitch. As to whether it is acceptable for someone else to, well, in this particular case, I don't blame the poster. You sunk to a new low of joking about brain damage and mental retardation. You have no high ground to stand on. As to calling people's opinions disgusting, I never had a problem with that. Attempting to belittle me or demean any arguments I've presented based on what others have said is pointless.

                  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
                  I haven't called you any names on this thread and I don't know of doing so anyplace else, either.

                  Careful or your tongue might get twisted into a permanent hypocritical knot.
                  The only hypocrisy here is yours. You complain about personal attacks and then launch into the ugliest one I've seen on these boards. I have not done the same.

                  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?
                  There is nothing obviously personal about why I've addressed your remarks. I stated clearly why I have done so. You crossed a line. Period. The fact that you addressed the comments that you made to someone that I don't particularly like and who makes no secret about her distaste for me is irrelevant. You have said things that no mature, compassionate person should ever say and you did so in a particularly inappropriate forum. And I would assume that you ignored one of my questions in a previous post because you had no logical response and no snappy comeback.

                  You want me, don'tcha. Admit it. Careful, this is a Family forum.
                  Quip away. You are not nearly as amusing as you seem to think you are. You seem to feel you have some standing around here and you pander to an audience. So be it. It doesn't diminish me in any way, it only makes your position weaker.

                  C.

                  Comment


                    Originally posted by cspanos
                    This doctor was the director of Sydney's leading SCI clinic. The next closest clinic of similar standing would be in Brisbane or Melbourne - a 1000 km trip! Also, he knew SCI and the related complications better than any physician in Sydney. My parents took all of his advice concerning my health to heart and simply ignored his amateur social work.
                    I thought it might be something like that. What a pain for you and your folks. Sounds like you handled it well as a family.

                    My rehab doctor actually kicked me out of her program. Officially she "withdrew" as my physician. She thought I asked too many questions and that this was somehow an insult against her knowledge and standing as a specialized physician. Since she was the head of the SCI unit, I had to find another doctor at the hospital who would monitor my case for the last few weeks of my stay in rehab. I had a panicked moment or two at the thought that I may have to go home before I was fully prepared, but all it did in the long run was reinforce my conviction that this is MY body and I am in control of it. I expect any doctor that I approach to treat me with as much respect as they expect to receive from me. I value their expertise, but ultimately they are being paid for their services and they should work as hard to earn and keep me as a customer as any other vendor.

                    C.

                    Comment


                      There's no "position", on this issue where you Tiger, daisy or Beth are concerned. The pathetic obsessing is nothing more than amusing to me today/night and I have no care or interest in appeasing any of you, or in "rallying" anyone to some side you seem intent on believing. As I've stated, I've been gracious to finally address you guys though, as you've been crying for.

                      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

                      Ok, now I AM bored and tired of you. You have asked nothing of relevance that I remotely have interest in clarifying further. Like I said, any attempt to engage from you was nothing more than simple baiting, which I chose to ignore.

                      So, now that we've also wasted enough of everyone else's time, I would prefer to let the discussion on the TOPIC continue, so I'll leave you to do whatever it is you wish to do. Have fun. Ta

                      Comment


                        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.
                        Of course you'll believe what you want to believe in order to make your case.

                        Xuxan, you've outdone yourself yet again.

                        Comment


                          I have been watching this discussion with interest and would like to offer a template upon to engage difficult topics such as this.

                          First, in any discussion that is as difficult as this, it is important to identify areas that we can readily agree on. For example, let me list some points that I think that most rational people would agree on.
                          Doctors are not always correct in their predictions of the future. In fact, doctors are frequently wrong in their predictions of function, particularly after brain and spinal cord injury. Doctors are also not very good at predicting future scientific and technological developments. The prediction that Ashley would be forever retarded with no possibility of any cognitive function beyond that of a 3 year old is at best a judgment based on existing knowledge and does not take into account future developments in science and technology.
                          Parents do not have the right to do anything they want to their children. While parents have substantial discretion concerning their children, our society does not grant parents complete discretion in what they do to their children. For example, parents may not physically or mentally abuse their children, withhold lifesaving therapies, or endanger their children. These are amply illustrated by many court decisions that have forced parents to allow their children to be given life-saving treatments that may have been against their religion.
                          Pre-pubertal removal of sexual tissues is more than just forced sterilization. Removal of the uterus and breast tissues eliminates a major source of estrogen during development and this may significantly affect brain development and health. Beyond preventing pregnancy, this is a procedure that will have significant effects on the sexuality of the person.
                          Mentally retarded people have fundamental rights. These include the right to privacy, to love and be loved, to develop friends and emotional relationships, to learn about sex and sexuality, to marry and to make informed decisions concerning children, and to express sexuality (Source). Involuntary sterilization should not be performed on mentally retarded persons who have or may have the capacity for reproductive decision-making, the ability to raise a child, or the capacity to provide valid consent to marriage.

                          Second, once we agree on the simpler issues, we can focus on the more complicated questions by first collecting objective information and then framing questions based on that information.
                          Does mental retardation justify involuntary sterilization?. If Ashley were not mentally retarded, the decision to remove her sexual tissues by her parents and doctors would be unacceptable and possibly even considered criminal. However, society has long condoned sterilization of mentally retarded persons, if the procedure is in the best interest of the mentally regarded person, the person lacks capacity for reproductive decision-making, the ability to raise a child, or the capacity to provide valid consent to marriage. However, less intrusive and temporary methods applied after puberty are preferred (Source). The American Association of Mental Deficiency has long and strongly opposed involuntary sterilization of retarded persons (Source).
                          Does mental retardation justify elimination of sexuality? Sexuality is a fundamental part of personality and a person. Elimination of sexual tissues, especially before puberty, will reduce sexual hormones during development and will influence brain development and function. This will affect both personality and brain function. Many parents of mentally retarded children are fearful of sexual abuse, unwanted pregnancy, and failure of birth control methods (Source). However, a decision to deprive a person of sexuality requires more justification than fear of sexual abuse, unwanted pregnancy, and failure of birth control methods. It is not clear that ease of care would be sufficient justification for suppressing sexuality and sexual behavior.
                          What are the consequences of pre-pubertal gonadectomy? Prepubertal removal of the uterus is likely to eliminate a source of sexual hormones which may affect brain development. While there is little experience with pre-pubertal gonadectomy in humans, there is substantial experience with neutering young dogs and cats. Ekici, et al. (2005) found that pre-pubertal ovariohysterectomy does not affect bone mineral density or contents. According to Olson, et al. (2001), it does not stunt growth in dogs or cats, a once held belief. Howe (1997) reported 3% complication rates. Comparisons of cats neutered at 7 weeks and 7 months suggest no difference. Neutered cats showed less intraspecies aggression, more affection, and less development of secondary sex characteristics (Source).

                          Third, it is useful to compare this situation with other related ethical controversies. This ensures consistency of logical and ethical decisions. For example,
                          Should parents be allowed to choose disability intentionally for their children?. R. Andrew Newman wrote in a 12 Jan 07 article entitled Playing the Devil that a recent survey revealed that 4 of 190 IVF clinics indicated that they have helped families have a baby with a disability or deformity. Some of these are deaf parents who want deaf children. Others have been dwarfs. What are the limits of parental discretion and what they can choose for their children?
                          Should parents be allowed to limit medical treatments for their children due to their religious beliefs? Many parents choose to limit the medical treatments applied to their children based on their religious beliefs. Two well-known examples are Christian Science (Source) and Jehovah's Witnesses. The former believes in spiritual healing and the latter refuse to use blood products. Many religions either ban or discourage the use of certain medical technologies for treatment. Should the parents' religious beliefs be allowed to endanger the lives of their children?
                          Are parents always the best judges of their children's welfare? Abuse of children by parents is very common. In 2004, approximately 872,000 children were found to be victims of child abuse or neglect in the United States (Source). Of these 62.4% suffered neglect, 17.5% were physically abused, 9.7% were sexually abused, 7% were emotionally or psychologically maltreated, and 2.1% were medically neglected. In addition, 14.5% experienced other maltreatment such as abandonment, threats of harm, and congenital drug addiction. Despite the best efforts of state and federal child welfare programs, over 1,400 children died in 2002 from abuse or neglect (Source). Who should judge the suitability of parents to make irreversible decisions such as gonadectomy of a mentally retarded child?

                          Fourth, it is often helpful to put the case in the context of history. For example,
                          The United States has a long history of forced sterilization of the mentally retarded. The United States was the first country in the modern era to undertake compulsory sterilization of mentally retarded people. Indiana was the first state to enact compulsory sterilization legislation for the mentally retarded in 1907. Several other states followed suit. An infamous 1927 Supreme Court decision (Buck v. Bell) legitimized the forced sterilization of a patient at a Virginia home for mentally retarded (see below). California sterilized more people than any other state by a wide margin, accounting for over a third of such operations and was said to be a model for Hitler's programs. In 1937, a Fortune poll showed that 66% of Americans believed that "mental defectives" should be sterilized (Source). After World War II, public opinion turned against compulsive sterilization because of the genocidal policies of Nazi Germany that forcibly sterilized over 400,000 "mental defectives" and others. In 1942, the Supreme Court ruled against sterilization of criminals (Skinner v. Oklahoma) as a cruel and unusual punishment. However, sterilizations of mentally retarded people continued until 1981. Although several governors, including those of Virginia, Oregon, and California have made public apologies, none have offered to compensate. One compensation case (Poe v. Lynchburg, 1981) was filed but it was rejected because the law was no longer in effect. Some victims have been compensated not because they were sterilized but because they and their parents had not been informed about the operation, as required by law. Many of those sterilized did not know that they had been sterilized.
                          Compulsory sterilization of mentally retarded people in other countries. In Canada, passage of a 1933 law in British Columbia and a similar law in Alberta established 3-member institutional boards to authorize the sterilization of any institutionalized person deemed "capable of propagating undesirable social characteristics". Many people were sterilized. Compensation lawsuits were filed in 2001 in British Columbia but were dismissed in 2003. In 2005, nine sterilized women were awarded compensation in an out-of-court settlement for CDN$50,000 each. Sweden had one of the most active compulsory sterilization program, sterilizing 62,000 individuals from 1930 to 1976, as a condition required for receiving welfare, to be released from prisons or mental institutions, or keeping custody of children (Source). Other countries that had active compulsory sterilization programs for mentally retarded include Australia, Norway, Finland, Estonia, Slovakia, Switzerland, Iceland, and some countries in South America.
                          Justifications for forced sterilization were often based on inadequate evidence The eugenics movement implied that mental retardation has a genetic basis. But, mental retardation may arise during development, during birth or even after birth, often with no genetic basis. Worse, the evidence for mental retardation in many people who were forcibly sterilized is questionable. For example, in the 1927 Supreme Court case (Buck v. Bell) that legitimized forced sterilization of the mentally retarded, Chief Justice Oliver Wendell Holmes wrote "Three generations of imbeciles are enough." Carrie Buck was the daughter of an institutionalized woman in Virginia. She was living in the community with foster parents, had been raped by a friend of her foster parents at age 17, and was sent to a mental institution to have the baby so that there would be no public scandal. After the Supreme Court decision, Carrie Buck was forcibly separated from her baby and sterilized (Source). There was no evidence that Carrie Buck or her baby were mentally retarded (Source).
                          Many of those who were sterilized want to have children. Many of the people who were sterilized did not want to be sterilized. The following story illustrates:
                          http://www.sptimes.com/News/111101/W...an_weeds.shtml
                          Human weeds

                          They were deaf or poor, diabetic or orphaned, somehow "abnormal.'' To make sure they would not reproduce, state sterilzed thousands.

                          By STEPHEN BUCKLEY

                          © St. Petersburg Times,
                          published November 11, 2001

                          LYNCHBURG, Va. -- Raymond Hudlow won three honors in World War II -- the Bronze Star, a Purple Heart and a Prisoner of War medal. The star is his favorite.

                          "It shows that I fought in a battle," he said.

                          Hudlow is 76. When he was 17, he was a patient at the Lynchburg State Colony for Epileptics and the Feebleminded, where doctors deemed him a "moron."

                          To the state, that meant he shouldn't have children. Against his will, its doctors performed surgery to make sure he never could.

                          "How would you like them to come and take your children away from you?" he said. "The state doesn't have the power to do that. God says you will produce children and multiply. And I can't multiply."

                          <more>


                          Wise.
                          Last edited by Wise Young; 14 Jan 2007, 8:05 AM.

                          Comment


                            Thanks, Wise. When the emotion is removed, stripped away from what I consider to be a sensitive, very personal topic, what you are saying makes sense.

                            As I wrote earlier, I had (and have) great difficulty looking at this in a strictly rational way. It hit too close to home for me given the comments and stated opinions of others about surgery, braces and therapy I received as a child.

                            When emotion is removed what was done to Ashley is wrong.

                            Comment


                              Very thought provoking post Wise. What mem said is true, when the emotion is removed from the situation, it changes things.

                              As parents you always try to do what is best in your eyes for your children. It is hard to look at circumstances without injecting emotions or for me it is.

                              I was thinking this would be something done on a case by case basis. I would never want something like this to become standard treatment for all mentally impaired people. I never agreed with the hormone treatment to stunt the child's growth but somehow I could understand the removal of the female organs. Perhaps like mem said it hit close to home.

                              I am very blessed that my daughter was born and grew up healthy.

                              After your post, I am not so sure I formed the right opinion.
                              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

                              Comment


                                Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you Wise!

                                These are all points that I brought up. I think it's important to evaluate the "Ashley Treatment" within the context of eugenics, disability rights, basic human rights, child physical abuse, child emotional abuse and medical experimentation.

                                It is also important to emphasize that parents DO NOT have the right to do with their children as they please. Children are NOT the property of their parents. Every decision a parent makes is not made for the benefit of the child nor are they always in the childs best interest.

                                To quote TR "all rights begin with personal sovereignty. Nothing is more fundamental than the right to govern one's own body." That right extends to the disabled!

                                Cspanos, thank you for raising that point. The fact that the child exhibits fearful behavior when she sees blood, which is not instinctive (a 3 month old does not recoil at the sight of red fluid) indicates a degree of cognitive awareness beyond the capacity of a 3 month old and indicates that negative, perhaps painful, memories have been associated with it. Yet, her parents want to subject her to medically unneccessary surgeries that will not improve her condition, that are not risk free and could endanger her life, involve pain, a healing process and possible bleeding that Ashley will be aware of ... all in an attempt to "bring joy to Ashley's life?" If anything is lacking in basic compassion for another human being, that line of thinking is.

                                We declaw cats to protect our furniture. The cat doesn't benefit, the cat's owners do. To argue that if the cat isn't declawed, it's value as a companion decreases which increases the liklihood that it'll be abandoned is to argue that if Ashley's body isn't altered, the liklihood that she'll be institutionalized is increased. Ashley is not an animal and unlike cats, the bodies of children cannot be physically altered to accommodate the wishes of the parents. It is dangerous for us to extend that line of thinking to human beings and justify mutilation for the benefit of caregivers ONLY when the issue of disability in injected.

                                I am horrified and sickened by what they are doing to her. Yes, IN MY OPINION, these parents are sick fucks that hold eugenics oriented views of disability and need to be imprisoned. Yes, I am condemning their treatment of Ashley as psychologically and physically abusive.

                                If these things were done to a AB child, the parents and physicians involved would have been jailed long ago.

                                There's the mistakened belief here that basic human rights and the right to govern ones own body does not extend to the disabled and that simply is not true.


                                Originally posted by Wise Young
                                I have been watching this discussion with interest and would like to offer a template upon to engage difficult topics such as this.

                                First, in any discussion that is as difficult as this, it is important to identify areas that we can readily agree on. For example, let me list some points that I think that most rational people would agree on.
                                Doctors are not always correct in their predictions of the future. In fact, doctors are frequently wrong in their predictions of function, particularly after brain and spinal cord injury. Doctors are also not very good at predicting future scientific and technological developments. The prediction that Ashley would be forever retarded with no possibility of any cognitive function beyond that of a 3 year old is at best a judgment based on existing knowledge and does not take into account future developments in science and technology.
                                Parents do not have the right to do anything they want to their children. While parents have substantial discretion concerning their children, our society does not grant parents complete discretion in what they do to their children. For example, parents may not physically or mentally abuse their children, withhold lifesaving therapies, or endanger their children. These are amply illustrated by many court decisions that have forced parents to allow their children to be given life-saving treatments that may have been against their religion.
                                Pre-pubertal removal of sexual tissues is more than just forced sterilization. Removal of the uterus and breast tissues eliminates a major source of estrogen during development and this may significantly affect brain development and health. Beyond preventing pregnancy, this is a procedure that will have significant effects on the sexuality of the person.
                                Mentally retarded people have fundamental rights. These include the right to privacy, to love and be loved, to develop friends and emotional relationships, to learn about sex and sexuality, to marry and to make informed decisions concerning children, and to express sexuality (Source). Involuntary sterilization should not be performed on mentally retarded persons who have or may have the capacity for reproductive decision-making, the ability to raise a child, or the capacity to provide valid consent to marriage.

                                Second, once we agree on the simpler issues, we can focus on the more complicated questions by first collecting objective information and then framing questions based on that information.
                                Does mental retardation justify involuntary sterilization?. If Ashley were not mentally retarded, the decision to remove her sexual tissues by her parents and doctors would be unacceptable and possibly even considered criminal. However, society has long condoned sterilization of mentally retarded persons, if the procedure is in the best interest of the mentally regarded person, the person lacks capacity for reproductive decision-making, the ability to raise a child, or the capacity to provide valid consent to marriage. However, less intrusive and temporary methods applied after puberty are preferred (Source). The American Association of Mental Deficiency has long and strongly opposed involuntary sterilization of retarded persons (Source).
                                Does mental retardation justify elimination of sexuality? Sexuality is a fundamental part of personality and a person. Elimination of sexual tissues, especially before puberty, will reduce sexual hormones during development and will influence brain development and function. This will affect both personality and brain function. Many parents of mentally retarded children are fearful of sexual abuse, unwanted pregnancy, and failure of birth control methods (Source). However, a decision to deprive a person of sexuality requires more justification than fear of sexual abuse, unwanted pregnancy, and failure of birth control methods. It is not clear that ease of care would be sufficient justification for suppressing sexuality and sexual behavior.
                                What are the consequences of pre-pubertal gonadectomy? Prepubertal removal of the uterus is likely to eliminate a source of sexual hormones which may affect brain development. While there is little experience with pre-pubertal gonadectomy in humans, there is substantial experience with neutering young dogs and cats. Ekici, et al. (2005) found that pre-pubertal ovariohysterectomy does not affect bone mineral density or contents. According to Olson, et al. (2001), it does not stunt growth in dogs or cats, a once held belief. Howe (1997) reported 3% complication rates. Comparisons of cats neutered at 7 weeks and 7 months suggest no difference. Neutered cats showed less intraspecies aggression, more affection, and less development of secondary sex characteristics (Source).

                                Third, it is useful to compare this situation with other related ethical controversies. This ensures consistency of logical and ethical decisions. For example,
                                Should parents be allowed to choose disability intentionally for their children?. R. Andrew Newman wrote in a 12 Jan 07 article entitled Playing the Devil that a recent survey revealed that 4 of 190 IVF clinics indicated that they have helped families have a baby with a disability or deformity. Some of these are deaf parents who want deaf children. Others have been dwarfs. What are the limits of parental discretion and what they can choose for their children?
                                Should parents be allowed to limit medical treatments for their children due to their religious beliefs? Many parents choose to limit the medical treatments applied to their children based on their religious beliefs. Two well-known examples are Christian Science (Source) and Jehovah's Witnesses. The former believes in spiritual healing and the latter refuse to use blood products. Many religions either ban or discourage the use of certain medical technologies for treatment. Should the parents' religious beliefs be allowed to endanger the lives of their children?
                                Are parents always the best judges of their children's welfare? Abuse of children by parents is very common. In 2004, approximately 872,000 children were found to be victims of child abuse or neglect in the United States (Source). Of these 62.4% suffered neglect, 17.5% were physically abused, 9.7% were sexually abused, 7% were emotionally or psychologically maltreated, and 2.1% were medically neglected. In addition, 14.5% experienced other maltreatment such as abandonment, threats of harm, and congenital drug addiction. Despite the best efforts of state and federal child welfare programs, over 1,400 children died in 2002 from abuse or neglect (Source). Who should judge the suitability of parents to make irreversible decisions such as gonadectomy of a mentally retarded child?

                                Fourth, it is often helpful to put the case in the context of history. For example,
                                The United States has a long history of forced sterilization of the mentally retarded. The United States was the first country in the modern era to undertake compulsory sterilization of mentally retarded people. Indiana was the first state to enact compulsory sterilization legislation for the mentally retarded in 1907. Several other states followed suit. An infamous 1927 Supreme Court decision (Buck v. Bell) legitimized the forced sterilization of a patient at a Virginia home for mentally retarded (see below). California sterilized more people than any other state by a wide margin, accounting for over a third of such operations and was said to be a model for Hitler's programs. In 1937, a Fortune poll showed that 66% of Americans believed that "mental defectives" should be sterilized (Source). After World War II, public opinion turned against compulsive sterilization because of the genocidal policies of Nazi Germany that forcibly sterilized over 400,000 "mental defectives" and others. In 1942, the Supreme Court ruled against sterilization of criminals (Skinner v. Oklahoma) as a cruel and unusual punishment. However, sterilizations of mentally retarded people continued until 1981. Although several governors, including those of Virginia, Oregon, and California have made public apologies, none have offered to compensate. One compensation case (Poe v. Lynchburg, 1981) was filed but it was rejected because the law was no longer in effect. Some victims have been compensated not because they were sterilized but because they and their parents had not been informed about the operation, as required by law. Many of those sterilized did not know that they had been sterilized.
                                Compulsory sterilization of mentally retarded people in other countries. In Canada, passage of a 1933 law in British Columbia and a similar law in Alberta established 3-member institutional boards to authorize the sterilization of any institutionalized person deemed "capable of propagating undesirable social characteristics". Many people were sterilized. Compensation lawsuits were filed in 2001 in British Columbia but were dismissed in 2003. In 2005, nine sterilized women were awarded compensation in an out-of-court settlement for CDN$50,000 each. Sweden had one of the most active compulsory sterilization program, sterilizing 62,000 individuals from 1930 to 1976, as a condition required for receiving welfare, to be released from prisons or mental institutions, or keeping custody of children (Source). Other countries that had active compulsory sterilization programs for mentally retarded include Australia, Norway, Finland, Estonia, Slovakia, Switzerland, Iceland, and some countries in South America.
                                Justifications for forced sterilization were often based on inadequate evidence The eugenics movement implied that mental retardation has a genetic basis. But, mental retardation may arise during development, during birth or even after birth, often with no genetic basis. Worse, the evidence for mental retardation in many people who were forcibly sterilized is questionable. For example, in the 1927 Supreme Court case (Buck v. Bell) that legitimized forced sterilization of the mentally retarded, Chief Justice Oliver Wendell Holmes wrote "Three generations of imbeciles are enough." Carrie Buck was the daughter of an institutionalized woman in Virginia. She was living in the community with foster parents, had been raped by a friend of her foster parents at age 17, and was sent to a mental institution to have the baby so that there would be no public scandal. After the Supreme Court decision, Carrie Buck was forcibly separated from her baby and sterilized (Source). There was no evidence that Carrie Buck or her baby were mentally retarded (Source).
                                Many of those who were sterilized want to have children. Many of the people who were sterilized did not want to be sterilized. The following story illustrates:
                                http://www.sptimes.com/News/111101/W...an_weeds.shtml




                                Wise.
                                Last edited by antiquity; 14 Jan 2007, 9:15 PM.

                                Comment

                                Working...
                                X