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John Hockenberry - Ashley X: straight on till mourning

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  • sndrake@aol.com
    Please read and distribute. --Steve http://www.johnhockenberry.com/Blog/EDADA4E6-82AC-4B28-9525-3242F18F772A.html Ashley X: straight on till mourning Peter Pan
    Message 1 of 1 , Feb 23, 2007
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      Please read and distribute.



      Ashley X: straight on till mourning

      Peter Pan never grew up. It was a cute story, a classic story. Peter
      Pan, you’ll recall, could fly. In the fairy tale Peter’s perpetual
      childhood symbolized freedom, dreams and possibilities while growing up
      meant meeting the dreary expectations of adults and entering into the
      grim realities of the mechanized industrial world, where people served
      masters and were no longer free. This childhood story of Peter Pan, the
      boy who wouldn’t grow up, was first presented to the world in 1904. It
      has since become part of the mythology of the 20th century.

      Exactly a century later some doctors and other grown-ups out in the
      Seattle area apparently believe that the 21st century needs a new story.
      This one is neither a fairy tale nor a myth. Sometime around 2004 the
      parents of a 6 year old girl named Ashley, with severe and ostensibly
      untreatable brain damage, decided that it would be better if she did not
      grow up. At the recommendation of some doctors in Seattle, Ashley’s
      parents agreed to have their daughter’s breasts surgically removed, to
      surgically remove her uterus, and to maintain her body in a more or less
      permanent state of pre-puberty with the use of high dose estrogen.

      A few years later in January of 2007, in a tone that suggested that they
      wished to have the same control over the public reaction to their
      decision as they have exercised over their daughter’s body, they
      disclosed the “Ashley Treatment.” The parents have argued that this
      treatment constitutes a medical breakthrough in that it allows them
      greater ease in the job of being the lifelong caregiver of Ashley.
      Because of her surgeries and estrogen therapy, she will always be about
      75 pounds and therefore easy for her parents to carry and move from bed
      to wheelchair, wheelchair to vehicle. Ashley, they say, will never have
      the pain and discomfort of breasts or menstruation because of this
      treatment. In a kind of grim Peter Pan story in reverse Ashley’s parents
      believe they have guaranteed their ability to care for their daughter as
      they themselves age by keeping her forever a child.

      Predictably, millions of people have weighed on on this matter.
      Disability rights activists have compelled a face-to-face meeting with
      the AMA on the ethics of the treatment. Philosophers and ethicists have
      taken positions. The controversial Princeton Professor Peter Singer who
      has offered his own treatments for severely disabled children in his
      academic writings (euthanasia) agrees with Ashley’s parents that this
      treatment is all about easing their daughter’s suffering.

      “What matters in Ashley’s life is that she should not suffer, and that
      she should be able to enjoy whatever she is capable of enjoying. ...
      Lofty talk about human dignity should not stand in the way of children
      like her getting the treatment that is best both for them and their
      families.” This is the Singer quote that Ashley’s parents have posted on
      their website, their only contact with the media.

      It is odd to hear the many criticisms and challenges to the Ashley
      Treatment (a considerable number from disability activists) called
      “lofty talk about human dignity.” It’s curious to imagine that human
      dignity is somehow removed from reality while the Ashley family’s lofty
      talk about parental love and nurturing that forms the basis for their
      decision to medically stunt their daughter’s growth and interrupt her
      biological development is, in contrast, a response to pragmatic reality.

      The well-meaning impulses of adults to try to maintain the status quo
      for their rapidly growing-up children is hardly a new theme in
      parenting. Such impulses always fly in the face of reality and the
      intent of these impulses is rarely if ever an indicator of their
      outcome. Consider the cases of the child compelled to takeover the
      family business, to go to an Ivy league school, to maintain music
      lessons to play sports or enter military service. Certainly a parent can
      argue that their insistence on such behaviors is in the best interest of
      a child. These parents could not however argue that their perception of
      their child’s interests nullifies the child’s identity to the point
      where they would kidnap their child in order to send them to college,
      the military, or medically alter them in some way so they would practice
      the piano longer. The idea of parents wanting their children to remain
      young babies is a longing that is familiar and this longing is not to be
      begrudged to Ashley’s parents. Yet to medically enforce such a longing
      on the grounds that these parents will be better caregivers for disabled
      Ashley for longer can hardly be justified as a right or responsibility
      of parenthood. I am undoubtedly better able to care for and protect my
      two five year olds if I keep them from growing up and never let them out
      of my sight. It is equally certain that I would be taken away to the
      funny farm if I tried to make it happen.

      The assumptions Ashley’s parents make about what they are doing are
      flawed for many reasons. First of all, Ashley’s parents cannot
      guaranteed they will be around to care for Ashley any more than they can
      guarantee that she will always weigh 75 pounds or that moving a 75 pound
      child around will always be something they can accomplish. Anything
      could happen to these parents in which case the consequences for the new
      caregivers of medically altered Ashley will be an unexpected mere
      convenience. There’s no way Ashley will ever be able to attest to her
      own relief that she never grew up after her parents are gone. In fact,
      her inability to do that was in some ways a precondition for her parents
      to make the decision to keep her in this medically induced state.

      Secondly, the medical institutions that might end up taking care of
      Ashley have been dealing with disabled people for quite a while without
      mandating medical alterations like the Ashley treatment. Those
      institutions that have engaged in mandatory sterilization, feeding tubes
      or the removal of teeth (in the case of my own institutionalized
      retarded uncle) have been banned as barbaric.

      I am far from arguing that institutions should be the place for children
      like Ashley. I believe as Ashley’s parent’s do that the best place for
      her is at home with her parents. As such, many have argued that these
      medical procedures have to be an option for overwhelmed parents because
      society has not provided support for chronic lifelong caregivers like
      Ashley’s mom and dad. I agree that there needs to be much more support
      for chronic caregivers and a rethinking of the lives of severely
      disabled people in our communities. But if for some reason society had
      never provided an educational system, college, or any options for
      non-disabled teenagers (as is actually the case in some urban
      communities) would this be grounds for parents and doctors to enforce
      some medical solution to make them easier for their parents to deal
      with, say high dose Thorazine? Don’t think it doesn’t happen just
      because it’s not talked about in the “blogosphere”. This is the issue.

      Disability has nothing to do with the morality of the Ashley Treatment.
      Parents of disabled or non disabled children are the people who bring
      them into the world and help them live their lives and grow up to be
      whatever it is they will be. While Ashley’s options as an adult are
      certainlyt limited because of her disability they were not predetermined
      until Ashley’s parents and doctors stepped in.

      I am not going to argue that Ashley’s parents are immoral or unjustified
      in what they did. I will argue that they are no longer Ashley’s parents.
      Regardless of their love and affection for their daughter their decision
      to remove her breasts and uterus and maintain her in a state of
      pre-puberty is not a parental decision. It is more the kind of control
      one might enforce on a pet to manage the relationship. It is something a
      farmer managing the productivity of his or her operation would naturally
      enforce on livestock. This would be done humanely, morally, and no-doubt
      with considerable tender affection and love for the subjects. There
      would be no outcry and no controversy, yet no one would confuse these
      acts of husbandry as parenthood.

      Right after I was injured in an accident that paralyzed me for life, a
      well meaning adult who was friends with my parents suggested that I
      amputate my legs since it would make it easier to get around. It was a
      compelling argument, which my parents considered and which we spoke
      about thirty years ago before rejecting it.

      Today I am glad I have my legs even if they are useless, represent a
      burden in a simplistic sense, and I might have moved faster if I had cut
      them off. If I had instead amputated my legs back in 1976 I would no
      doubt say today I was glad I had them removed having spent much of my
      life adjusting to the change. However, a parent making that decision for
      me, or ordering a trans-orbital lobotomy for my own good, or giving me
      up for adoption whether I was aware of it or not would be an act of
      parental abdication with future consequences that can never be known.

      Peter Pan will never grow up, he will always live in a symbolize
      childhood of freedom and dreams. Ashley’s perpetual childhood may
      symbolize freedom and dreams for someone, just not for Ashley. There is
      no real moral question here. It is just a question of clarity.

      Caregivers who are parents in the eyes of the law have the option to do
      anything they want in a case like this. Clearly there is no law standing
      in the way of doctors performing these sorts of procedures nor is there
      likely to be. Ashley’s parents are undoubtedly humane, caring, loving,
      custodians of their “Pillow Angel.” They are just no longer parents.
      It’s a choice they, themselves made.

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