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    There was one legal issue that we needed to investigate related to “sterilization” of a disabled person. Upon consultation with a lawyer specializing in disability law, we found out that the law does not apply to Ashley’s case due to the severity of her disability, which makes voluntary reproduction impossible. The law is intended to protect women with mild disability who might chose to become pregnant at some future point, and should have the right to do so. Furthermore, “sterilization” is a side effect of the “Ashley Treatment” and not its intent


    http://ashleytreatment.spaces.live.com/

    I guess Ashley's surgery wasnt research, it was a decision by the parents and the medical ethics board of this hospital. I am not really sure that even consultation with an advocacy group could have changed the treatment.
    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 Lindox
      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.
      And we don't have to be. Social services invites themselves into peoples private lives and homes everyday when abuse is suspected. The international community has condemned parents who allow the genital mutilation of their daughters. Everything a parent does or that's sanctioned by the medical community isn't right, good or in the best interest of the child, despite the fact that those who "love" them may think so. We don't need to be Ashley's doctors or parents to speak out. What happened to her is everyone's business.


      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.
      But a board of strangers approved the surgeries. All 40 of those people did not know Ashley. They examined her body, looked at photos and reviewed her records but that does not mean they humanized her. I'm sure a person, who has experienced disability themselves and is familiar with the common biases and misconceptions held by those within the profession towards disability, would have suggested a plan completely different from the one adopted.

      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.
      Not really. As you pointed out, disabled children are rarely believed even when they do report abuse. Our society has a higher degree of tolerance towards those who abuse disabled children. As far as consent, a disabled minor can protest a treatment but they ultimately have no recourse to stop it.

      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.
      In the case of all abused children, we can't undo the abuse but we can take those responsible to task. We can't reverse what was done to Ashley but we can speak out and demand an investigation which is what the disabled rights advocates are doing. We can hopefully prevent them from attaining their goal of making this the standard of treatment for all disabled girls.

      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.
        Hello. The ethics board in the local hospital failed and thereby as per the writing as far as I see it by the journal editor I find it to be under the umbrella of research (call it for that matter studies, –good or bad, depending on the viewpoint, the kid or the father), thus his comment to have exactly this kind of discussion in the scientific community about is this the right thing to do or not”…. - You don’t think this sounds like to discuss this a bit more as for his comment, thus research/(to study and find out)? Kristina Borror must be way out on the prairie here if she can’t see this suggestion by the editor of the journal, and thereby should she have taken necessary actions to come to the bottom and find out of all this. You don’t agree on this?

        Comment


          Originally posted by darkeyed_daisy

          http://ashleytreatment.spaces.live.com/

          I guess Ashley's surgery wasnt research, it was a decision by the parents and the medical ethics board of this hospital. I am not really sure that even consultation with an advocacy group could have changed the treatment.
          Who knows. Perhaps it would have been changed if someone familiar with the biases health professionals hold towards disability had been involved. Perhaps a human rather than a medical face could have been put on Ashley. Perhaps a plan that focused on her comfort and humanity above that of her parents could have been implemented instead.

          Comment


            Originally posted by darkeyed_daisy

            http://ashleytreatment.spaces.live.com/

            I guess Ashley's surgery wasnt research, it was a decision by the parents and the medical ethics board of this hospital. I am not really sure that even consultation with an advocacy group could have changed the treatment.
            Take a knife and cut some of the members in that ethical board a little and see if they change their minds in an experiment. They probably will not call it research, but more likely quack research to use some medical terms (which by the way is bad to use in medical research, but that word comes to mind), if not thry using words like mutilation and attach on the individual and ask if they understand that. You really have to wake up here DD. Is there something I don’t know here? Was it all a bad joke?
            Last edited by Leif; 17 Jan 2007, 7:26 PM.

            Comment


              Sen,
              You are right and I know it.
              Just sometimes being right isn't enough. When things become problematic for the non-disabled..they often and usually take out their frustrations on the weakest at the time of their frustrations.

              When you speak out as a patient..with or without advocates surrounding you..you will pay dearly for that action. Maybe not today..or tomorrow but even a year from now when the offended has a chance at revenge THEY WILL use that chance. Especially if they themselves are in any way mentally/emotionally unstable.

              And you the patient will be the only one realizing what is happening and usually the offender has influenced your care until you are too weak physically and emotionally to do a damn thing about it. You will be lucky to survive the revenge. And a severely mentally disabled person has NO defenses to begin with. All the advocates in the world will not even know what is happening and accept the reason for you severe condition or your demise.

              I hope things have changed..but I don't think it has.
              Life isn't about getting thru the storm but learning to dance in the rain.

              Comment


                I just received this .....

                WPAS Conducting Preliminary Investigation
                into "Ashley's Treatment"

                On January 6, 2007, after receiving complaints and concerns about what press reports are calling "Ashley's Treatment", the Washington Protection and Advocacy System (WPAS), pursuant to its federal authority, opened a preliminary investigation into this treatment. David Carlson, an attorney and WPAS Associate Director of Legal Advocacy, is assigned as lead investigator.

                We are concerned with what we have read and heard in the media accounts. We want to learn the facts so that we can make a determination, among other things, as to whether or not all of the requirements of applicable law were met. Once we complete our investigation, we will determine what, if any, additional steps will be necessary.

                Under our federal mandate, we have requested documents from Children's Hospital and Regional Medical Center in Seattle through its counsel. Counsel for Children's Hospital has stated that the Hospital intends to cooperate fully with our investigation. We will not be commenting further to the press on the investigation at this time. Questions regarding the Washington Protection and Advocacy System and its federal authority may be directed to Mark Stroh, Executive Director or Deborah Dorfman, Associate Executive Director and Director of Legal Advocacy.

                Washington Protection and Advocacy System
                Mark Stroh mstroh@wpas-rights.org
                Deborah Dorfman debbied@wpas-rights.org
                Voice (800) 562-2702
                TTY (800) 905-0209
                Ashley is a little girl worth knowing about:http://www.ashleyx.info

                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'm interested in what he says about what was done to Ashley.

                  Comment


                    Originally posted by Lindox
                    Sen,
                    You are right and I know it.
                    Just sometimes being right isn't enough. When things become problematic for the non-disabled..they often and usually take out their frustrations on the weakest at the time of their frustrations.

                    When you speak out as a patient..with or without advocates surrounding you..you will pay dearly for that action. Maybe not today..or tomorrow but even a year from now when the offended has a chance at revenge THEY WILL use that chance. Especially if they themselves are in any way mentally/emotionally unstable.

                    And you the patient will be the only one realizing what is happening and usually the offender has influenced your care until you are too weak physically and emotionally to do a damn thing about it. You will be lucky to survive the revenge. And a severely mentally disabled person has NO defenses to begin with. All the advocates in the world will not even know what is happening and accept the reason for you severe condition or your demise.

                    I hope things have changed..but I don't think it has.
                    Me either Lindox.

                    Comment


                      Originally posted by Lindox
                      . . . 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.
                      So, if I know of a child being abused by their parents, or neglected or mistreated, I am lacking in credibility because I don't have the means to take them in? I should keep my mouth shut and not voice an opinion just because I can't take them in?

                      I recently saw on the news that a man had his son locked up in his room for years, imprisoned in his own bedroom. I'm sure the "father" thought this was best for the child. But should his neighbors have said nothing because they had no way to take care of the child themselves?

                      Your logic baffles me. Ugh.

                      Comment


                        Thank you for the update PD.

                        For some reason, I don't think anything will come of it but at the least, perhaps recommendations preventing the future use of disabled children as experimental test subjects for non-therapeutic treatments will be made.


                        Originally posted by PDnemesis
                        I just received this .....

                        WPAS Conducting Preliminary Investigation
                        into "Ashley's Treatment"

                        On January 6, 2007, after receiving complaints and concerns about what press reports are calling "Ashley's Treatment", the Washington Protection and Advocacy System (WPAS), pursuant to its federal authority, opened a preliminary investigation into this treatment. David Carlson, an attorney and WPAS Associate Director of Legal Advocacy, is assigned as lead investigator.

                        We are concerned with what we have read and heard in the media accounts. We want to learn the facts so that we can make a determination, among other things, as to whether or not all of the requirements of applicable law were met. Once we complete our investigation, we will determine what, if any, additional steps will be necessary.

                        Under our federal mandate, we have requested documents from Children's Hospital and Regional Medical Center in Seattle through its counsel. Counsel for Children's Hospital has stated that the Hospital intends to cooperate fully with our investigation. We will not be commenting further to the press on the investigation at this time. Questions regarding the Washington Protection and Advocacy System and its federal authority may be directed to Mark Stroh, Executive Director or Deborah Dorfman, Associate Executive Director and Director of Legal Advocacy.

                        Washington Protection and Advocacy System
                        Mark Stroh mstroh@wpas-rights.org
                        Deborah Dorfman debbied@wpas-rights.org
                        Voice (800) 562-2702
                        TTY (800) 905-0209

                        Comment


                          WPAS, is that something similar like Greenpeace?

                          Comment


                            No, every state in the US has a protection and advocacy agency which
                            is supposed to protect the rights of people with disabilities.
                            Ashley is a little girl worth knowing about:http://www.ashleyx.info

                            Comment


                              Originally posted by Scorpion
                              So, if I know of a child being abused by their parents, or neglected or mistreated, I am lacking in credibility because I don't have the means to take them in? I should keep my mouth shut and not voice an opinion just because I can't take them in?

                              I recently saw on the news that a man had his son locked up in his room for years, imprisoned in his own bedroom. I'm sure the "father" thought this was best for the child. But should his neighbors have said nothing because they had no way to take care of the child themselves?

                              Your logic baffles me. Ugh.
                              When you are able to change a situation..you must do your best to change it if it is for the better.

                              In this one case, Ashley, her parents must not have considered what they were doing as illegal..which child abuse is. And keeping child out of the world is abusive. So..it is a most complicated different type of situation.

                              Would that statement apply in other situations. NO.
                              Will the boy locked in his room be instantly entered into an istitution if he is taken from his father? NO.
                              He will go to another family until all is resolved.

                              Ashley will be forced into an institution.

                              Should everyone report abuse to the authorities if they witness it? Damn straight they should. Will the best outcome happen because you did? Not necessarily..but after the reporting is over very few follow up on the issue of what is happening to the child..and more interested in how the parent is being punished. Often the child goes right back to this parent.

                              It's complicated and no one size fits all.
                              Life isn't about getting thru the storm but learning to dance in the rain.

                              Comment


                                Originally posted by Scorpion
                                So, if I know of a child being abused by their parents, or neglected or mistreated, I am lacking in credibility because I don't have the means to take them in? I should keep my mouth shut and not voice an opinion just because I can't take them in?

                                I recently saw on the news that a man had his son locked up in his room for years, imprisoned in his own bedroom. I'm sure the "father" thought this was best for the child. But should his neighbors have said nothing because they had no way to take care of the child themselves?

                                Your logic baffles me. Ugh.
                                Hello Scorpion - Voicing is more than enough to do as I see it. One example, well I got problems with my cord when I was a grown-up, you too as I recon, but as a youngster in our lunch break at a fairly big construction project I witnessed a time shortly after I got that job back then at that place that bullies from some union organisations picked on a curtain person while we all was sitting in an switchgear room trying to enjoy the packed lunch, and no one said anything when those bullies started picnicking on this person. This continued in every lunch break, and those picking was in this case of course a very few lazy grown ups, which btw took easy union jobs instead of working; well one could spot them from a long distance in a crowd Lol. Well I raised my voice and said what I felt about it in a sort of polite way; remember those were a team of bullies Lol. The simple voicing I remember I did (and this had noting to do with the willingness to get into a fistfight, which I surely would have lost anyway) say was; isn’t it possible for me to be able to enjoy my packed lunch here in peace with a good atmosphere without you grownups which should know better to not pick on this person like you do? They did think (and luckily not kill me), after that, everything was cool in our switchgear room when having the lunch break, well there was many projects after that and people to meet after that, one just have to address the core issues, maybe. Another point here, it does not always have to be linked to disabilities to see right and wrongs, there is no point in pushing good able people out as for this as I see it, like some wants to own to be rightful disabled or whatever. Put it this way; If we all have relatives there would be more AB people out there than us SCI’d for example on "our" side, and most of them would be likewise concerned about some issues we have as they surely would know about, I think it has more to do with how one view other persons, and to interact here with them and in life in general and otherwise, I would think. Hey, Scorp’ not directed at you all this, but you might understand some of my views and writing here, not everything, but some of the writing I hope Lol
                                Last edited by Leif; 17 Jan 2007, 9:20 PM.

                                Comment

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