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    Originally posted by LaMemChose
    Just because laws are in place, it doesn't make the laws or subsequent actions of parents, guardians, doctors, so-called review boards correct in their action or inaction in reference to medical decisions, "standards" of "care" for a child.
    The consent was what I was trying to understand. If an IRB was not consulted then her treatment did not fall under the code of federal regulations regarding research subjects which would have ensured that a panel would have been consulted before treatment was performed. Antiquity stated that she would like to see a "disability advocacy group" consulted in cases such as this. My reply was in response.
    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


      Originally posted by kate
      I'd like to call my friend who was one of the doctors participating in this case. I think it's important that he see some of these comments, and if he's willing take the opportunity to respond to some of them . . . before I ask him, though, I'd like to ask if any of you might have an issue with that.
      I'd love to hear what he had to say.

      Comment


        Originally posted by PDnemesis
        An IRB was not consulted on Ashley's behalf.
        This case did not require IRB approval therefore there was no IRB approval requested or given. Your knowledge of actual medical protocols is sorely lacking.

        Comment


          Originally posted by thejoker
          This case did not require IRB approval therefore there was no IRB approval requested or given. Your knowledge of actual medical protocols is sorely lacking.

          It is a simple statement of fact - an IRB was not consulted.


          There has been a call for an investigation as to whether an IRB was in fact required called for by Steven Taylor, Center on Human Policy, former chair of the Syracuse University's IRB (now on sabatical) with others who names I can't spell from memory.
          Ashley is a little girl worth knowing about:http://www.ashleyx.info

          Comment


            Originally posted by LaMemChose
            What was done to Ashley will not prevent her from being sexually assaulted should she continue to live beyond medical expectation. What the parents and doctors elected potentially makes her a target for pedophilic devos. She'll never outwardly mature sexually given the removal of her breast buds and uterus.
            La’Mem – A good point and a very serious point in this entire decision process for those procedures if this was one of the handful concerns of this father’s concerns to eliminate for his daughter… Now, since this narrow-minded father of this kid has also made a website full of photos of his daughter I bet many of the paedophiles right now as we speak (write) are flocking around that website. Images of his daughter with text included in newspapers avoiding problems like you write about above here - to avoid sexually abused - are also now all over the world. But the tragicomic thing is that due to this procedure the opposite could now be the fact (like you also say) along with those images on the website, this I think because now those paedophile bastards will have her right where they want to, images and not getting bigger. I’m more and more stunned about the judgements of this father and his motives as well. If this father was up-to-date when it comes to crappy shit in this world, he should know that one doesn’t post photos of their children on internet with a possible tracing as for addresses etc. (which in this case are not a problem to find out of, since everything is posted by him). If the father was only interested in his daughter well being he wouldn’t have done that, just another silly thing to do by him, and if he had too, he should have avoided all those images. Neither does I think he has the Messiah Complex (wanting to save the world) by doing all this due to the relatively rare problems his daughter originally had, I just think he is plain and simple ignorant and are thinking more about himself than his daughter, yes I do. Now I also think other reasons as for him are behind all this. Ok, enough from me here for a while. But to add, to you and all of you that have had problems in your childhood with experiences you write above here, you have my deepest sympathy.
            Last edited by Leif; 17 Jan 2007, 5:17 PM.

            Comment


              Originally posted by thejoker
              This case did not require IRB approval therefore there was no IRB approval requested or given. Your knowledge of actual medical protocols is sorely lacking.
              One more – if the truth, even worse, but I doubt it; can you back up your statement a bit more?

              Comment


                I once knew a young girl that was born with this exact condition. She was institutionalized and sent to the Orthopedic Hospital I was in due to some unexplainable breaks in both of her arms. She came in to the facility is the most horrid condition. And you could smell her body odors from a very long distance away.

                After repairs were made on her broken bones..she was shipped right back to the same institution...why..nobody not her parents..nobody wanted her.
                Many severely mentally disabled came thru the doors of our ortho facility and they all had broken bones and other even more severe problems with definate abuse major abuse issues.

                This was in the 1960's..but I don't think institutions have advanced much since then and she is MUCH better off being with her parents and those that love her.

                Their choices..I have no comment on. It was their choices to make..and they know and love her.
                Life isn't about getting thru the storm but learning to dance in the rain.

                Comment


                  Originally posted by darkeyed_daisy
                  In my state a person must be 18 or emancipated to be able to give consent for treatment.
                  Ok. In the state I received treatment it was either 14 or 16.

                  So you are going to redefine who can give consent for treatment for a disabled child (in some states under 18)?
                  Am I personally going to do it, lol, I don't think that's possible. What I would like to see come of this is a law requiring that a panel, which consists of at least one disabled rights advocate, be consulted before a disabled child is subjected to non-therapeutic (treatments not intended to improve or attenuate disability) and experimental treatments.

                  As I stated below, I believe that if this was the case, a more human centered plan of treatment would have been suggested for Ashley.
                  Last edited by antiquity; 17 Jan 2007, 6:10 PM.

                  Comment


                    Originally posted by Lindox
                    I once knew a young girl that was born with this exact condition. She was institutionalized and sent to the Orthopedic Hospital I was in due to some unexplainable breaks in both of her arms. She came in to the facility is the most horrid condition. And you could smell her body odors from a very long distance away.

                    After repairs were made on her broken bones..she was shipped right back to the same institution...why..nobody not her parents..nobody wanted her.
                    Many severely mentally disabled came thru the doors of our ortho facility and they all had broken bones and other even more severe problems with definate abuse major abuse issues.

                    This was in the 1960's..but I don't think institutions have advanced much since then and she is MUCH better off being with her parents and those that love her.

                    Their choices..I have no comment on. It was their choices to make..and they know and love her.

                    Parents abuse disabled kids too Lindox. Read post#276. The experimental treatments Ashley underwent can be considered abuse.

                    I was sent to Children's Seashore House in NJ after discharge from CHOP and there was a constant revolving door of children who had been released only weeks before to their parents, returning due to abuse. Disabled children are 3 times more likely to be abused by their parents than able bodied children. Keeping a child out of an institution is no guarantee that he/she won't be abused.

                    Some of those kids were there longer than they should have been because they didn't want to go home. When I was released, they told my mother that they expected to see me back there in a couple of months. That's how prevalent it was.
                    Last edited by antiquity; 17 Jan 2007, 6:07 PM.

                    Comment


                      Originally posted by PDnemesis
                      It is a simple statement of fact - an IRB was not consulted.
                      It is also a simple statement of fact that the IRB was not required to be consulted.

                      This is what is a waste of time about your "advocacy" - the IRB had no jurisdiction over this case but you insist it is an issue.

                      Focus on the Ethics Board - they were the one's that gave the approval. Focus on the physician's who recommended and performed the procedures. Focus on how this child was so grossly treated so she could remain a "pillow angel" but STFU about the IRB.

                      Comment


                        http://www.jacksonholestartrib.com/a...60008293c1.txt

                        "It is unethical and unacceptable to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for," said Steven Taylor, director of Syracuse University's Center on Human Policy.

                        Taylor said that the treatment was essentially a medical experiment and that a hospital institutional review board should have been consulted beforehand.

                        Complaints have been filed with the federal Office for Human Research Protections. But Kristina Borror, a director at the office, said Thursday her agency does not believe it was a research case and thus has no authority to investigate. {by me; if not so - why did the med. journal paper being issued on this research?}


                        <sci>

                        Dr. Richard Molteni, the hospital's medical director, said there was no need to consult an institutional review board because Ashley's case was not an experiment. He said the hospital firmly believes it acted in her best interest.

                        The decision to proceed was "thoroughly reviewed by a wide range of medical and surgical specialists, including neurologists, development specialists and ethicists," Molteni said.

                        The Washington state attorney general's office said it is evaluating a complaint from a New Jersey disabled-rights activist. The state has no laws prohibiting forced sterilization.

                        <sci>

                        Dr. Frederick Rivara, the journal's editor, said he published the case not out of support or opposition, but to bring it to doctors' attention "and to have exactly this kind of discussion in the scientific community about is this the right thing to do or not."

                        This is strange. If Molteni (I’ve excluded the DR. title) says there was no need to consult an IRB because the hospital believes it acted in her best interest... - Will believing be good enough from now on to say by any local hospital wanting to carry out similar procedures be a good enough statement to not consult an IRB?

                        Edit to add; also, if Dr. Frederick Rivara of the journal says it is important to address the scientific community, it surely looks to me as a new “treatment”, slash/ and also experimental and thereby could be viewed as research (at the best, to me it all is quach med research, and thereby should be precicely a job for Madame Borror). How lame can also Kristina Borror be? If she had some touch with medical science it would help a lot, get her out of that building and force her to se this kid. Bureaucrats like her is not helping out here, instead I thrust many and most of the posters in this thread.
                        Last edited by Leif; 17 Jan 2007, 6:36 PM.

                        Comment


                          Leif - IRB review and approval is required by research and clinical trials. The appropriate body to review Ashley's "treatment" was the Ethics Board.

                          Comment


                            Originally posted by kate
                            I'd like to call my friend who was one of the doctors participating in this case. I think it's important that he see some of these comments, and if he's willing take the opportunity to respond to some of them . . . before I ask him, though, I'd like to ask if any of you might have an issue with that.
                            I think that would be great Kate.

                            Comment


                              Originally posted by thejoker
                              Leif - IRB review and approval is required by research and clinical trials. The appropriate body to review Ashley's "treatment" was the Ethics Board.
                              Ethics board it is then!

                              One thing I've noticed with these "expert" panels of physicians and specialists is that disability rights advocates are never on them.

                              People who have experienced disability and who would be cognizant of recommendations in line with ableist or eugenics views are never invited to speak or submit their own proposals or plans of treatments.

                              If a few disabilty rights advocates had sat on or been invited to submit an alternative plan, I'm certain that a more humane (human instead of medical) approach to Ashleys development would have been adopted.
                              Last edited by antiquity; 17 Jan 2007, 6:21 PM.

                              Comment


                                Sen,
                                You are right about abusive parents also.
                                In the olden days there were nurses that did home visits. Something that all disabled children especially the mentally disabled should have privy too even today I think.

                                Ashley will never be 12 or even three mentally so she will never have the ability to make her own decisions.

                                It does seem that what was done to her body and is being done is over the line..at least to us.
                                BUT we are not her parents or her doctors.
                                I just don't know how any board of strangers could come up with a better plan so to say. It's a very difficult situation. That is why so many are institutionalized.

                                I was a teenager and very impressionable when I witnessed many of these patients. We also had a nurse an RN that was abusive to EVERYBODY. Abuse is everywhere.

                                This child has no defenses. And that breaks my heart.
                                At least those of us with physical vs. mental disablities have defenses.

                                We have our minds and our mouths..and we do need to use them..but if we are not able to take this child and give her a better life in our opinions..we are lacking in credibility as I see it.

                                I was able at 14 to halt some of the hitting this one RN did to all of us..but it wasn't thru methods that are acceptable to most adults. A young person even reporting what is happening will be quieted by the adults in these situations. So..you do what you can.

                                The RN came to slap me in the face one day for having my very big big mouth and I was able to grab her skinny little fly swatter arm and I told her if she slaps any of us anymore I would break her arm. Needless to say she did stop slapping in front of me anyway. And due to her own guilt never reported this unacceptable behavior to the Director..and I didn't spend one night in the closet for saying it.

                                IMO the only way to change anything is to infiltrate it and somehow get others to come with you and show the TRUTH. Today that is possible.

                                But these parents told the truth and nothing is really happening or can change what has happened. Hopefully it's coming out will save others from the same abuse..but usually it just causes others to not tell what they are doing. Complicated.
                                Life isn't about getting thru the storm but learning to dance in the rain.

                                Comment

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