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Thread: Mutilation of daughter as disability treatment

  1. #161
    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?

  2. #162
    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.

  3. #163
    Senior Member Zeus's Avatar
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    Quote 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

  4. #164
    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.

  5. #165
    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.

  6. #166
    Senior Member Zeus's Avatar
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    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; 01-15-2007 at 03:34 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

  7. #167
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    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

  8. #168
    I absolutely would prefer that her body had been preserved in its entirety in the happy event her mind were to someday join it.

  9. #169
    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.

  10. #170
    Quote 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; 01-15-2007 at 07:05 AM.

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