Turns out my column in China Daily ran last Thursday.  They informed me today.  Here is a link.  It is about "Ashley’s Treatment."  For regular readers of The Useless Tree, you will notice that I have blogged on this topic; so, the newspaper piece is an example of the interaction (I tend to avoid using the word "synergy") of old media and new.  Cool.

   It looks like this will be a regular gig.  Every two weeks or so, I will do a column for the main paper.  So far so good – not a word was changed from what I submitted.  It could be an interesting ride…

Chinese wisdom on choices for little Ashley
By Sam Crane
Updated: 2007-01-25 06:59 

A
recent news story described a difficult choice taken by the parents of
a disabled girl in Seattle, Washington. It also resonated with both
Taoist and Confucian philosophies.

Ashley the girl’s last name
and the names of her family members have not been disclosed to protect
their privacy is profoundly disabled. Her brain did not develop
typically and, as a result, she cannot sit up, stand, walk or talk.

Although nine years old, she is, essentially, an infant, and she will likely remain that way for life.

Her
parents love and care for her, but that care was becoming more
difficult as she grew taller and heavier. It was getting harder to lift
her, to bathe her, to keep her integrated into family and community
activities. Her mother and father realized that Ashley’s life would
become increasingly limited as she grew.

Unusual solution

So, they, together with their doctors, decided to try to keep her from growing.


They reasoned that, if they could stop her physical development, they
could do a better job keeping her comfortable and mobile and happy.

The
doctors came up with an unusual solution: removing her uterus and
breast tissue and injecting her with large doses of hormones. It seems
to have worked.

After about two years of treatment, they now
believe that Ashley will remain four feet, five inches tall, well short
of the five feet, six inches they estimate she would have reached
without the procedures.

When the story hit the US press, some of
the headlines were startling: "Parents Stunt Disabled Girl’s Growth",
"Frozen in Time", "Lap Daughter". One medical ethicist, Arthur Caplan,
stated bluntly that the treatment is "morally wrong".

Taoist approach

Did the parents go too far?

A
modern day philosophical Taoist, while eschewing the language of
morality, would likely agree that the parents efforts were extreme.

Although
religious Taoism is famous for its medical interventions to extend and
improve life, philosophical Taoists, especially those elaborating the
thought of Zhuang Zi, would take a hands-off approach to disability.

Consider this passage, in which one character reflects upon his physical decline:

"Why
should I resent it?" replied Zi Yu. "If my left arm is transformed into
a rooster, I’ll just go looking for night’s end. If my right arm is
transformed into a crossbow, I’ll just go looking for owls to roast.
And if my butt’s transformed into a pair of wheels and my spirit’s
transformed into a horse, I’ll just ride away! I’d never need a cart
again!"

Zhuang Zi is spoofing our fears of death, conjuring up
fantastic images of bodily transformation to say that we should just
give up trying to control our worldly fate. If our health changes, we
should simply accept it and find the best, most creative expression of
that moment’s circumstances.

With this sort of attitude, it is
hard to see how a contemporary Zhuang Zi would advocate what Ashley’s
parents have done. His skepticism would not be based on liberal notions
of individual autonomy, as I suspect Caplan and other medical ethicists
are presuming.

Rather, the Taoist view, while agreeing that
such intervention is wrong, would be based on acceptance of natural
outcomes. Disability, from this vantage, is neither a burden nor a
tragedy. It is an inevitable and timeless human quality that allows for
as much happiness and love and sorrow and pain as any other human
condition.

Confucius says

A present day Confucian would see things differently.

The
parents are acting out of their love and commitment to their daughter.
The treatment, though unusual, would allow them to better care for her,
and it is precisely in that care that the integrity of each member of
the family is created and reproduced.

One of the cardinal
Confucian virtues is humanity ren. The Chinese character depicts the
figure of a person next to the number two.

Sinologists suggest
that the structure of the character itself is a reminder of the
essential social nature of human identity and significance. We are, in
a sense, no one outside of the social relationships through which we
express our love and concern for others. Contrary, once again, to
liberal individualism, Confucianism holds that we find our humanity in
our associations with others. The parents are thus enacting Ashley’s
humanity when they do the daily work of keeping her connected to the
household and the community at large.

They are also making
themselves better people by performing one of Confucius’ obligations:
"Cherish the young." And, furthermore, they are adding to the totality
of humanity in the world as their example of loving care and the
comfort and happiness of their daughter radiate out across the country
and the globe. Ashley’s humanity adds to everyone’s humanity.

There
may be no final resolution to the opposition of Taoist and Confucian
perspectives on Ashley’s case, but the ancient thinkers reach out to us
from the past to add to our understanding of a family’s struggle to do
the right thing.

Sam Crane Avatar

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7 responses to “China Daily: How To Treat Disability”

  1. Elisabeth's Mom Avatar

    The Taoist did not put restrictions on other human beings or create barriers for them in the way we do today here in America. I wish we were all as laid back as Zhuang Zi in his acceptance of “natural outcomes.”

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  2. Elisabeth's Mom Avatar

    How to treat disability? First we must treat the society that leaves no space for our children to fit. This is their only disability.
    This was Pearl Buck’s mission here in America. It is no coincidence that the woman who went to China as the daughter of two Christian missionaries turned out to be the greatest advocate for our children of all time. It only took 40 years living there for her to become transformed by a culture rooted deep in the teachings and traditions of Zhuang Zi and Lao Tzu.
    We need to continue on the path she left behind … it is here where our past meets the future…

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  3. Sam Crane Avatar

    I agree with you, Elisabeth’s Mom: we really do need a society that allows all children to find their place comfortably. But I am a bit puzzled by your Pearl Buck reference. What struck me about her book, The Child Who Never Grew, was her avoidance of her daughter’s name. Not once, I believe, did she use her name. Now, perhaps she was trying to protect her from publicity – though, being Pearl Buck’s daughter no doubt attracted a fair share of media attention anyway. For me, however, it had the effect of distancing and, even (though this may be too strong), dehumanizing her. Detachment might be consonant with a Taoist sensibilty, but, in this case, I had a hard time identifying with and understanding Buck.

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  4. Elisabeth's Mom Avatar

    I can only guess that by using her daughter’s name, people would think the book was about her daughter instead of being about all our children. Had she used her daughter’s name, the issues would have become trivialized.
    Her book I thought was a gift she left behind for all people as a reference point. It was a literary snapshot of America in the 50s to be used as a starting point by which we could begin to measure the progress she hoped we would make.

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  5. Sam Crane Avatar

    I had never thought about the absence of the name in that way. In any event, as a starting point it does help us see the progress that has been made. For all of the problems we have with including disabled people into society, there is a great deal more inclusion and presence now than there was then.

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  6. Elisabeth's Mom Avatar
    Elisabeth’s Mom

    If you look at time in linear terms, yes.
    Being present doesn’t guarantee that one is included, does it? Most of our children go under the radar screen for this reason. We see them, but they are not included.

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  7. Andrew Garfield Avatar

    We need to continue on the path she left behind … it is here where our past meets the future..Good Luck

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