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    Wise,
    I wish all could agree on the initial points of your post, but I encounter far too many people who are diametrically opposed to people with cognitive disabilities being given access to any sexual feeling what-so-ever (not that it is possible to swipe clean their feelings, but there is an attempt to remove any sexually stimulating TV, books, activities, etc. from their life.)

    And to the others.... What I posted initially was based on what was released before the media got hold of this issue and was known to be true. It was in response to the contents of the journal article and parent's blog alone. There have been over 138 article written about this now and some facts have been muddied.

    What remains true, is that a family made a decision to change their daughter's body primarily to meet their caregiving needs. Then took their idea to a team of doctors who agreed that this situation required a medical fix. Once Ashley was "fixed" they thought they had done such an exemplary job of it that they should publish a journal article about it. And the publisher's evidently on some level agreed as they published the article. The family then decided to blog about The Ashley Treatment. All of these actions are designed to lead to a generalized acceptance of this as a means to help families cope with having a severely disabled family member.

    If this was about Ashley and Ashley alone they would be discussing Ashley's treatment and not "The Ashley Treatment."
    Ashley is a little girl worth knowing about:http://www.ashleyx.info

    Comment


      Originally posted by LaMemChose
      Of course you'll believe what you want to believe in order to make your case.

      Xuxan, you've outdone yourself yet again.
      PDNemesis is Xuxan from New Mobility?

      Does PD refer, by chance, to the NM poster with the moniker ParaDude?

      Heehee. Oddly enough I think Paradude would be pleased with the arguing that ensued here. What I've read tells me the only thing he dislikes more than Susan is Carecure.

      I wonder how this discussion turned out over there? When I have time perhaps I shall go lurk.

      To Wise-

      Why do you think the parents/doctors chose hysterectomy instead of simple tubal ligation for Ashley? Birth Control is just one minor side effect of hysterectomy.

      On their website the parents said it is v. rare for somebody to survive past 5 in Ashley
      s condition. How much danger is there that the Ashley Treatment would ever really be used in the future?
      Blog:
      Does This Wheelchair Make My Ass Look Fat?

      Comment


        Originally posted by betheny
        PDNemesis is Xuxan from New Mobility?

        Does PD refer, by chance, to the NM poster with the moniker ParaDude?

        Heehee. Oddly enough I think Paradude would be pleased with the arguing that ensued here. What I've read tells me the only thing he dislikes more than Susan is Carecure.

        I wonder how this discussion turned out over there? When I have time perhaps I shall go lurk.
        Yes and yes.

        **sigh**

        Comment


          Thanks for posting Wise.

          I earlier raised some questions/issues, with hopes people could discuss many of the issues you've noted. I, like antiquity, feel it is important, if not critical, to view this one particular issue in historical context of disability. Furthermore, it is important to look at our own (SCI/CC community) perceptions of disability as it relates to Cure efforts - from grassroots advocacy, to policy making, and scientific research, and more.

          I am particularly troubled by SCI cure advocates, who on the one hand support greater scientific research and preservation of bodies to be able to benefit from cure, and using evidence based outcomes and rigorous testing, as foundation for medical practice and policy development/implementation; while quick to devalue other (non-SCI'd) disabled persons' issues/needs and isolating them as individual concerns, almost separate from the human rights and dignity issues oft discussed here. To distinguish this as "Us" and "them" further alienates and compartmentalizes disabilities and disability rights groups. It is being rather naive to wonder why other disability groups are reticent to join forces with cure efforts with the disregard and dismissive attitudes seen here by SCI'd individuals.

          Comment


            Originally posted by betheny
            Why do you think the parents/doctors chose hysterectomy instead of simple tubal ligation for Ashley? Birth Control is just one minor side effect of hysterectomy.
            Good question Betheny. It's not to prevent sexual abuse - she still has a vagina. It's not to protect from unwanted pregnancy - tubal ligation would help there. Perhaps to help with cramps, but we don't know if she'll ever have cramps or if she'll live that long. Principal benefit seems to be to the care-giver.

            Originally posted by betheny
            On their website the parents said it is v. rare for somebody to survive past 5 in Ashley's condition. How much danger is there that the Ashley Treatment would ever really be used in the future?
            Since it was very rare for her to reach 7 (when the surgeries were performed), and the surgeries deal principally with issues she'll encounter as a teen, why even perform these invasive procedures? As for the 'Ashley Treatment', the outrage is that both the parents and doctors involved are actively promoting this as a potential standard of care. To paraphrase Antiquity, that is fucking sick.

            Originally posted by chick
            I am particularly troubled by SCI cure advocates, who on the one hand support greater scientific research and preservation of bodies to be able to benefit from cure, and using evidence based outcomes and rigorous testing, as foundation for medical practice and policy development/implementation; while quick to devalue other (non-SCI'd) disabled persons' issues/needs and isolating them as individual concerns, almost separate from the human rights and dignity issues oft discussed here.
            This troubles me too. Many of the technologies that may one day aid those living with SCI could also aid people in Ashley's condition. Stem cells truly are amazing, for they can become nerve cells, spinal cells and brain cells. Nobody can predict Ashley's future potential.

            So many people with SCI use standing frames, FES bikes, etc. all in the hope of preserving their body for some potential future improvement. Who preserved Ashley's body? Who was her advocate?

            In the cold reality of Ashley's situation, stripped bare of emotion, what was done to Ashley is beyond disgusting. Equally disgusting was how quickly some of us (including myself initially) empathised with Ashley's parents. I'm saving my empathy for Ashley from hereon.

            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


              I wonder why you guys and gals don't want to give the SAME hope to this little girl, for a better life in the future, in regards to stem cell research, as you do yourself?
              Why do people think it is right to mutilate a child in this instance and not allow another parent to withhold treatments they do NOT believe should be given to their children? Such as cancer therapies or such for those with religious convictions?
              One of the purposes of the thread was to garner support to oppose this so called TREATMENT from becoming a standard for similar cases. It wasn't until post 113 this was even mentioned again. And only brought up twice following that.
              I have reserved my right to wait til now to post as this was one of those topics I tend to get really aggitated about when folks seemingly don't see the bigger picture. Of which I too am guilty of often.
              Finally Dr wise posted some glaringly obvious info that had been overlooked by a large portion of people.
              We continually fight each day for rights so simple as to park a car in a spot. How can we as humans agree to such treatment of an innocent child? We raise hell when we talk about sexual mutilation practiced in 3rd world countries. I think here, we dropped the ball.
              More inclined to 'feel sorry' for the parents, and we get pissed when someone feels sorry for us being disabled. We were patting the parents on the head and saying way to go. Have we forgotten what 'QUALITY' of life entails? One of the BIGGEST components of quality of life is HOPE. Hope for a better tomorrow, a chance at a better life, etc.
              Personally, I don't want this to become a standardized treatment for anyone.
              We MIGHT want to consider what the FIRST post said, and get the word out that maybe we don't agree.
              If you still DO agree to this, that is YOUR perogative. I won't be in your boat.
              I have VERY strong opinions on most issues that concern our world. I do my best to avoid threads where my hardheaded and ungraceful style come out. Not because I am afraid to speak my mind, quite the opposite. It is just that typing does not afford the quantity and quality I need to express my views. And I often start seeing red when glaringly obvious things(to me) are overlooked. We are human. We all get pissed occasionaly.
              I think this would be a more united community of activists, if we learned to FORGIVE, hopefully forget after forgiving, and most of all, try to respect the right of others to have an opinion that differs from yours.

              The number one thing, we can't let slip years of crawling and fighting our way out of the hole' to acheive equality; We can't forget that that which we fight for, is HOPE for all.
              WATCH out, little things slip by, and before long, that 'Accepted Standard ' of so called treatment, will apply to you.

              I had a lot say here and may have missed some of it, I can't type fast enough to say what I want. But think about what was said.
              Hope for ALL, not just me....

              https://www.facebook.com/john.baxter.1213986

              Comment


                Yes, what's done is done to Ashley. Nothing can change that. Which is partly why condeming the parents for what they did to Ashley isn't useful. But they are using a blog to garner support for what they did - and that I think is very different.

                Many disability organizations (ADAPT, DREDF, Disability Rights Coalition, Not Dead Yet, TASH, AAIDD, Disability Rights Commission, and others) have come out with a statement condeming Ashley's treatment and demand that it not set a precedent. So far I have seen no disability organization support it (but that doesn't eliminate that there might be some that have - but I checked to see it VOR had as they would be mostly likely to and they are silent.)
                Ashley is a little girl worth knowing about:http://www.ashleyx.info

                Comment


                  Lots of really great opinions and reasonings on both sides of this. I have my views of this, but I'm not going to enter into this as it really is up to those that are taking responsibility to better this childs life beyond what is typical standards of care nowadays for the cognatively disabled. Not everyone can play the perfect hand with the cards they are dealt, or maybe they are playing the perfect hand right now (crystal ball is cloudy right now). One thing comes to mind reading about this is a local story in Chicago where a retarded girl being cared for at a place that provided the 'standard of care' mysteriously became pregnent. Yup, the world sucks, and those different either can adapt or become victimised as was the case there. Natural selection (or attempts to bolster it) was touched on also in this thread, anyone want to take a gander what would happen before we as a society became so technically proficient? Lots of variables for sure, and I guess that is good for a lively debate (or in the CareCure version...battle lines drawn...alliances formed...ammunition...arms at ready...WORLD WAR THREE, lol.) But all kidding aside, I would like to point out one variable that wasnt touched on too much...why is this PDnemisis trolling these forums? Is she trying to garner support for her crusade against some people she probably never met and are in a totally different situation? Is she on this trolling crusade as some sort of salvation from being responsible for directly inflicting her own son's disablity? Does she feel guilty and in an effort to relieve this guilt she is attempting to make others involved with raising a disabled child (which quite possibly was due to no fault of the parent unlike PDnemisis), somehow the villian as well? Heck I dont know, but I though I would throw out this variable as well into this debate. Oh yeah, what the heck is a 'very low lumbar' SCI in her profile? I havent heard anyone who actually has a SCI describe theirs like that yet. Is this troll attempting to ingratiate herself to us? Oh well, that's my say...lock and load, and maybe shooting the messenger is a good idea here!

                  Originally posted by PDnemesis
                  Just as a point of information, my son is not what is often considered high functioning person with Down syndrome - rather the reverse. And his birth having been born addicted to cocaine and alcohol meant he had a very very medically challenging beginning to his life. His 'failure to thrive' did not end until the summer he turned 5, until that point his life was held in a very tenuous balance. His IQ is 43 (although I personally don't take any stock in the meaningfulness of IQ scores.)
                  .

                  Comment


                    Originally posted by CapnGimp
                    I wonder why you guys and gals don't want to give the SAME hope to this little girl, for a better life in the future, in regards to stem cell research, as you do yourself?
                    Why do people think it is right to mutilate a child in this instance and not allow another parent to withhold treatments they do NOT believe should be given to their children? Such as cancer therapies or such for those with religious convictions?
                    One of the purposes of the thread was to garner support to oppose this so called TREATMENT from becoming a standard for similar cases. It wasn't until post 113 this was even mentioned again. And only brought up twice following that.
                    I have reserved my right to wait til now to post as this was one of those topics I tend to get really aggitated about when folks seemingly don't see the bigger picture. Of which I too am guilty of often.
                    Finally Dr wise posted some glaringly obvious info that had been overlooked by a large portion of people.
                    We continually fight each day for rights so simple as to park a car in a spot. How can we as humans agree to such treatment of an innocent child? We raise hell when we talk about sexual mutilation practiced in 3rd world countries. I think here, we dropped the ball.
                    More inclined to 'feel sorry' for the parents, and we get pissed when someone feels sorry for us being disabled. We were patting the parents on the head and saying way to go. Have we forgotten what 'QUALITY' of life entails? One of the BIGGEST components of quality of life is HOPE. Hope for a better tomorrow, a chance at a better life, etc.
                    Personally, I don't want this to become a standardized treatment for anyone.
                    We MIGHT want to consider what the FIRST post said, and get the word out that maybe we don't agree.
                    If you still DO agree to this, that is YOUR perogative. I won't be in your boat.
                    I have VERY strong opinions on most issues that concern our world. I do my best to avoid threads where my hardheaded and ungraceful style come out. Not because I am afraid to speak my mind, quite the opposite. It is just that typing does not afford the quantity and quality I need to express my views. And I often start seeing red when glaringly obvious things(to me) are overlooked. We are human. We all get pissed occasionaly.
                    I think this would be a more united community of activists, if we learned to FORGIVE, hopefully forget after forgiving, and most of all, try to respect the right of others to have an opinion that differs from yours.

                    The number one thing, we can't let slip years of crawling and fighting our way out of the hole' to acheive equality; We can't forget that that which we fight for, is HOPE for all.
                    WATCH out, little things slip by, and before long, that 'Accepted Standard ' of so called treatment, will apply to you.

                    I had a lot say here and may have missed some of it, I can't type fast enough to say what I want. But think about what was said.
                    Hope for ALL, not just me....
                    As with Chris/cspanos, I have reversed my original thoughts on this. Actually, I have put my "feelings" (emotions) to the side.

                    It's no more okay to have done this to Ashley than it'd be to lop off the parts of me I won't be using and/or don't currently use.

                    Given my life and lack of a permanent partner, I'd say a baby is out of the question. However, I'm not rushing to see my ob/gyn for a hysterectomy. I use other, less drastic methods of birth control as the situation warrants.

                    If Ashley's life expectancy is so short, why were these things done to her other than parents' convenience? Yes, get a lift if they should be so lucky she lives long enough to grow.

                    Chick was right. Comparing tendon transfers and braces to Ashley's multiple surgeries and hormone treatments is not the same.

                    I feel sad Ashley has gone through so much for what may well be parental convenience.

                    Comment


                      Andy,
                      First off- I have no guilt about my son's disability - he is adopted. Second, I have posted here, although not often since July. Third, I don't like to specify my lumbar injury level as I get tired of explaining that some people including me have 6 lumbar vertebrae.

                      I posted this because I think it is critically important that the disability community respond to this situation.
                      Ashley is a little girl worth knowing about:http://www.ashleyx.info

                      Comment


                        Darned if I see any connection between someone being a cure advocate and someone declining to join PDNemesis' crusade. 2 different issues, in my eyes. As ever, people need to advocate as they see fit.

                        Andy, I wonder how often it happens that the defenseless become impregnated while under institutional "care". It is criminal, and it is tragic, but I think I've probably heard of it 100 times in my life. The Depo Provera seems like the bare minimum they should be provided, to me, both to hold the periods at bay and to prevent pregnancy resulting from victimization.

                        For those that feel so strongly that Ashley was wronged, will you be taking action?

                        Exactly what sort of action are you seeking here anyway, PDNemesis?
                        Blog:
                        Does This Wheelchair Make My Ass Look Fat?

                        Comment


                          Last Tuesday was a day of action where concerned people contacted people who were involved in this taking place - directly or indirectly - to express their thoughts. I quoted my email in my first post.

                          As part of that was getting the word out about what had happened to Ashley and why.

                          Now different disability organizations are being asked to make statements. Many have. Others are working on statements. Some need encouragement to do so.

                          Women's organizations are also being asked to make statements.

                          But perhaps most important the American Medical Association is being asked to convene to create a policy regarding The Ashley Treatment. To date they say they have nothing in their policies that addresses this sort of treatment as it is unique.

                          Individually one person may not be able to accomplish much, but if 10 people contact NOW (as an example) and ask them where they stand on Ashley's treatment - maybe they will issue a statement - and the impact of that will be great.

                          Never underestimate what one person can do. And that includes Ashley.
                          Ashley is a little girl worth knowing about:http://www.ashleyx.info

                          Comment


                            Originally posted by betheny
                            Darned if I see any connection between someone being a cure advocate and someone declining to join PDNemesis' crusade. 2 different issues, in my eyes. As ever, people need to advocate as they see fit.
                            Putting aside PDnemesis' crusade for the moment...

                            As a cure advocate Betheny, do you believe that the bodies of the disabled should be maintained in case therapies that could return function are made available in future?

                            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


                              It's not MY crusade - the Action alert came from Feminist Response in Disability Activism (FRIDA), with the support of
                              Chicago ADAPT, the national ADAPT community and Not Dead Yet.
                              Ashley is a little girl worth knowing about:http://www.ashleyx.info

                              Comment


                                To me it's apples and oranges, Chris.

                                Yes, I think people with sci should try to keep their bodies fit. A lot of what sci people do to themselves would look horrible to the outside world, if we didn't do it of our own volition.

                                We electrocute our legs (FES). Cut holes in ourselves (mitrofanoff, colostomy). Take capsules of bird poison. (4-AP).

                                Ack.

                                Maybe Ashley's parents really are monsters, but my soul rebels at the idea of her being placed in an institution where the odds are high she will be neglected, abused, sexually molested. Maybe PDNemesis would like to adopt her...

                                That is the sole reason I defend her parents. They want to keep her home with her family.

                                I don't know. When I was newly injured, (7 months), I was home alone for the first period of time, when a monster tropical storm blew into Houston. I was immobilized by that barometer-induced pain, couldn't get off the couch to pee. My family was gone, best friend across town separated by a flood. I had to call the ambulance. When the EMT's came in, the guy said "You're here alone?"

                                "Yeah."

                                "That's okay. I'm sure we can find a nice home for you."

                                My blood ran cold, Chris, I was terrified, and helpless, and at his mercy. It was silly, my husband and kids and parents wouldn't let that happen. But for that moment I was petrified. It was too close for comfort. I hate to see it happen to Ashley and I have a gut feeling it will.

                                Maybe that incident scarred me, gave me an irrational fear of those "nice homes".

                                None of which is to say I plan to advocate in favor of the Ashley's Treatment. My position on it is based on instinct, not facts, because I don't think we have enough facts to judge. I sure wouldn't go telling people that this is what they should do to their helpless children.
                                Blog:
                                Does This Wheelchair Make My Ass Look Fat?

                                Comment

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