Announcement

Collapse
No announcement yet.

Mutilation of daughter as disability treatment

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

    Betheny,

    I'm at work right now, so I don't have time to respond at length. But honestly, I think the family is being disingenuous when they use references to trying to prevent the institutionalisation of Ashley. This is not an either/or scenario, not by a long shot.

    Seriously, how has anything that the family has done prevented institutionalisation? Sure, keeping Ashley small is easier than buying a hoist. So what? A hoist can also prevent institutionalisation in that case.

    I actually think we have enough facts to judge, and I judge the doctors and parents involved harshly. How is Ashley any different than a high-level quad to care for? Lots of high-level quads AREN'T institutionalised - without the 'Ashley treatment'.

    What happens, in 20 years time, if stem cell technology can repair Ashley's brain? How will she judge those who were charged with her care? As a cure advocate, doesn't a part of you wish Ashley's body had been preserved?

    Chris.
    Last edited by Zeus; 15 Jan 2007, 3:34 AM. Reason: Sloppy grammar
    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 guess it really comes down to the brain and ability to consent. I have thought about this all day. Although I am now second-guessing my first opinion. I still would as a parent support the parents in their decision. I dont know that I would do the same under the same circumstances and I would not advocate for an across the board treatment for every disabled person. No one knows for sure what the correct answer to this is. We can only read the medical journal and form our own opinion whether right or wrong in the eyes of someone else. I have made other decisions that people around me have faulted me for. I think these parents really did do what they thought was best for the love of their daughter. From what Dr Young posted, it doesnt seem right but it also doesnt seem right to fault the parents because they know the situation much better than we do.
      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


        I absolutely would prefer that her body had been preserved in its entirety in the happy event her mind were to someday join it.
        Blog:
        Does This Wheelchair Make My Ass Look Fat?

        Comment


          Bethany, Ashley does have her mind and there is no reason to think she is not happy. A 3 month old age equivalent can be happy if she is fed, comfortable and getting appropriate stimulation and affection. There is no reason to assume she is not getting any of these things. It is only those who have more, who think she is not happy or has less.

          Comment


            Originally posted by cspanos
            Betheny,

            I'm at work right now, so I don't have time to respond at length. But honestly, I think the family is being disingenuous when they use references to trying to prevent the institutionalisation of Ashley. This is not an either/or scenario, not by a long shot.

            Seriously, how has anything that the family has done prevented institutionalisation? Sure, keeping Ashley small is easier than buying a hoist. So what? A hoist can also prevent institutionalisation in that case.

            I actually think we have enough facts to judge, and I judge the doctors and parents involved harshly. How is Ashley any different than a high-level quad to care for? Lots of high-level quads AREN'T institutionalised - without the 'Ashley treatment'.


            What happens, in 20 years time, if stem cell technology can repair Ashley's brain? How will she judge those who were charged with her care? As a cure advocate, doesn't a part of you wish Ashley's body had been preserved?

            Chris.
            I agree. None of what they propose will prevent the institutionalization of Ashley. Sane parents would opt for a lift any day over endangering their childs life through invasive, painful and experimental surgeries. This is not an either/or situation.

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

            Everyone else seems to be viewing the disabled child in this equation as a non entity, as a thing without human rights or at least who's rights are secondary to those of others. This is fairly typical and unfortunately, quite common.
            Last edited by antiquity; 15 Jan 2007, 7:05 AM.

            Comment


              Originally posted by diane2
              Bethany, Ashley does have her mind and there is no reason to think she is not happy. A 3 month old age equivalent can be happy if she is fed, comfortable and getting appropriate stimulation and affection. There is no reason to assume she is not getting any of these things. It is only those who have more, who think she is not happy or has less.
              Three month olds don't recoil at the sight of blood. Ashley's reaction indicates a degree of cognitive awareness beyond the capacity of a 3 month old.

              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.
                I guess it's only wrong when these things are done to able bodied children. With disabled children, anything goes.


                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....
                I think the reason we're not getting this is because we refuse to see her as a human being with basic human rights. Since many in support of her treatment acquired their injuries as adults, they still possess ableist views which are being expressed in these posts. An ableist mindset can't accept that a disabled person is an equal or that the rights that apply to them extend to the disabled as well. We are focusing on parental rights and ignoring Ashley's rights. Of course, this wouldn't be the case if Ashley were able bodied but because she's disabled, whatever they do, whatever anyone does to her is ok. Cripples don't matter anyway.

                Ableism

                A set of practices and beliefs that assign inferior value (worth) to people who have developmental, emotional, physical or psychiatric disabilities.
                Last edited by antiquity; 15 Jan 2007, 7:55 AM.

                Comment


                  Originally posted by darkeyed_daisy
                  I guess it really comes down to the brain and ability to consent. I have thought about this all day. Although I am now second-guessing my first opinion. I still would as a parent support the parents in their decision.
                  Because a child cannot challenge authority, do you think that authority by default, is in the right?

                  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.
                  Last edited by antiquity; 15 Jan 2007, 7:03 AM.

                  Comment


                    Originally posted by PDnemesis
                    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.
                    This is good. To put their significance in context, these groups are why SCI's aren't relegated to nursing homes immediately after discharge and why the Americans with Disabilities Act became law. They are why states are required to make public transportation services available to us and why handicapped parking spaces exist, why all new buildings are required to be WC accessible and why universities provide assistance to disabled students. The Centers for Independent Living and Vocational Rehab. exists because of them. Disability rights groups are why laws no longer exist that would deny SCI's 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.

                    As a reminder, the international community has condemned parents who abandon their newborn girls in China and India and parents who support the genital mutilation of their daughters. We condemn parents here who physically and sexually abuse their children and for medical neglect when they're denied care due to religious convictions. People, communities, nations involve themselves in the affairs of individual families all of the time. When things are done to children that constitute abuse according to our value system, we get involved. But in the case of Ashley, we are told not to get involved, to not condemn the parents although the case for abuse exists. There's a double standard here and it appears as though it's due to Ashley's medical status.

                    I am glad that the disabled rights advocates are fighting for Ashley (the human being, not the medical problem) and prioritizing her needs before those of others, as they fought for us and all disabled people. I am glad that the eugenics proponents lost, we should all be glad for that.
                    Last edited by antiquity; 15 Jan 2007, 7:34 AM.

                    Comment


                      Originally posted by antiquity
                      Because a child cannot challenge authority, do you think that authority by default, is in the right?
                      You are absolutely right Antiquity. No I don't think that authority by default is in the right. It is very interesting that those with childhood injuries are the ones who are seemingly more in the right. I am now third-guessing my opinion. If we can be cured by stem cells then perhaps Ashley could too. I am begininning to see that the doctors in this case misled these parents in order to further the very agenda you have been speaking of. I have experienced even myself doctors who have offered to perform radical procedures to make my life "better". But thankfully my knowledge and ability to rationalize kicked in and I was able to decline. Ashley really does deserve this same choice. I see now.

                      No one should ever be forced to undergo procedures such as these without the ability to consent. I guess when someone says it is the best thing for your child, we really need to step back and rationalize. I am guilty of not doing the rationalization in this case. You always want to believe that doctors and parents only want the best for your children but that may not always be the case.

                      I would never advocate for sterilization to become common treatment for the disabled, mental or otherwise. There are too many "standard protocols" in hospitals as it is.

                      I opted to keep my own body in its original state so Ashley deserves the same in the even ESC can cure us.

                      I am just curious, how do they measure her cognitive ability and assign an age?
                      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 antiquity

                        It's interesting that the people who are the most opposed to the Ashley Treatment (myself, lynnifer, Cspanos) are the few members here who acquired their injuries as children and so have experienced life as a disabled child and one person who actually has a disabled child.
                        I just read this thread last night and I was thinking the same thing.

                        I couldn't respond last night because I was too upset. Right now, I'm having a hard time typing because I'm shaking.

                        This upsets me so much.

                        Comment


                          Originally posted by antiquity
                          Since many in support of her treatment acquired their injuries as adults, they still possess ableist views which are being expressed in these posts. An ableist mindset can't accept that a disabled person is an equal or that the rights that apply to them extend to the disabled as well. We are focusing on parental rights and ignoring Ashley's rights. Of course, this wouldn't be the case if Ashley were able bodied but because she's disabled, whatever they do, whatever anyone does to her is ok. Cripples don't matter anyway.
                          Good theory. May be some truth in it. Can I just indulge myself by pointing out that I'm only 2 years post and, as I said, never felt comfortable with it. It's so wrong I cannot believe anyone can sit on the fence about it.

                          Didn't take a post from Wise to form my opinion either.
                          C5/6 incomplete

                          "I assume you all have guns and crack....."

                          Comment


                            I think it is a particular kind of ableism. People with spinal cord injuries more often than not still have able minds. I doubt very much if Ashley was in the same physical condition, but was cognitively more aware many people would support the parents. Decades ago sterilizing people with any sort of disability was commonplace. Overtime fewer and fewer people have been routinely sterilized. This is a step backwards not forward.
                            Ashley is a little girl worth knowing about:http://www.ashleyx.info

                            Comment


                              Originally posted by RehabRhino
                              Didn't take a post from Wise to form my opinion either.
                              I might have to comment further on this later...

                              Comment


                                Originally posted by antiquity
                                Everyone else [not everyone, Sen ] seems to be viewing the disabled child in this equation as a non entity, as a thing without human rights or at least who's rights are secondary to those of others. This is fairly typical and unfortunately, quite common.
                                And disgusting.

                                Comment

                                Working...
                                X