This story came across the wires yesterday:
In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little ``pillow angel'' a manageable and more portable size.
The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
I must admit that, at first, I was skeptical. My Taoist sensibilities suggested that the parents were going too far, they were intervening too severely into the child's life and, possibly, opening her up to new risks down the road (what would the long term effects of the treatment be?). But the more I thought about it, and the more I read through the parent's blog, the more reasonable the Confucian interpretation of this case became: the parents have done the right thing because the treatment, though apparently perverse, will, in fact, improve their ability to care for Ashley and it was an action rooted in the experience and love that the parents have demonstrated over the years.
I elaborate on both the Taoist and Confucian positions below the jump:
My initial Taoist skepticism was based, at least in part, on my own experience with Aidan. One thing he taught was the recognition and acceptance of limits. As he grew and developed in his own way, I came to realize that I could not maintain my expectations for what I thought his life should be. Rather, I had to accord myself to his life as it was. This became a stark physical fact as he got taller and heavier. It took more time to lift and move him; the pace of his day had to slow down to accommodate the time required to transfer him from place to place; less could be done. This was emotionally painful: yet another difference that distinguished him from peers and friends. But it was also the expression of his integrity, who he was in and of himself.
In short, I understand well what the parents mean when they say:
Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.
These are vitally important aspects of a healthy and happy life. What they are trying to do is maximize her potential through social interaction. Although it may take a significant medical intervention, and change her into something she would not have been, there is a clear benefit for her that they are striving for.
Thus, the more I think about it, the more it seems that a Confucian understanding might be the best one.
From this perspective, the parents are reminding us that all individuals find their identity and meaning in a social context. We are no one outside of the close and loving relationships through which we create our humanity. Their actions are rooted in Ashley's immediate social milieu. By making it easier to carry her about, to move her from place to place, to get her into the shower, to take her to school, they are maintaining her links to the supportive surroundings that nurture her.
There is also a larger social benefit, which of course is not the parent's immediate concern. Through their care and love for her they are enacting their own humanity and, as they move out into the world at large, extending that humanity to others. In utilitarian terms (even though Confucianism is not a form of utilitarianism), they are adding to the total sum of humane goodness in the world. Even Peter Singer should be able to understand that.
This Confucian approach is different from the individualistic focus of standard Western medical ethics. Here is how Arthur Caplan understands the case:
I understand the parents' logic. And I can even understand how a medical team might come to agree that a person who cannot move will have a better life small than big. But I think the Peter Pan option is morally wrong.
I believe it is true that it is easier to move Ashley about if she is the size of a 6-year-old. But I also believe that a decent society should be able to provide appropriately sized wheelchairs and bathtubs and home-health assistance to families like this one. Keeping Ashley small is a pharmacological solution for a social failure - the fact that American society does not do what it should to help severely disabled children and their families.
I assume (his comment is not fully explicated) that he sees this as sacrificing individual characteristics - Ashley's stature and sexuality - because of a social failure. The one is being denied in the name of the many. That is a reasonable position. However, the hard fact is that Ashley's parent's will not find adequate solutions in society at large. The social failure that Caplan recognizes is not going away any time soon. So, why should the parents not seek a better solution in the meantime? A Confucian perspective validates the parents taking action now; it is their primary responsibility. And by taking this action they may also be creating a broader consciousness of the need to do something about the social failure to adequately support disabled people.
In an odd way, Caplan is actually doing what he is implicitly accusing the parents of doing: he is, essentially, asking them to sacrifice Ashley's well being for some indeterminate time until a broader social solution can be found for the challenges of disability.
In the end, I think the parents are right. They are acting to create the best conditions for Ashley's life. They are obviously deeply committed to her. And their love and care benefits us all.
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