China Daily: How To Treat Disability

    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.

Comments

[Elisabeth's Mom]

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."

[Elisabeth's Mom]

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...

[Sam Crane]

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.

[Elisabeth's Mom]

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.

[Sam Crane]

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.

[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.

[Andrew Garfield]

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