John Hockenberry - Ashley X: straight on till mourning
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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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