Even though we finished our discussion of The Spirit Catches You and You Fall Down a few weeks ago there are still parts of the book that are reverberating. One of the issues that the book raised that I’m still processing is the concept of personhood and what that means. Once Lia was declared brain dead by her doctors this was the turning point of her treatment. At this point Western medicine took more of a maintenance attitude towards Lia; everyone in the Western medical profession at this point viewed Lia as dead and so were taking the approach of just trying to make Lia comfortable. Basically all of Lia’s doctors were waiting for her to die. However, on the Hmong side Lia’s parents still viewed Lia as their child. They didn’t view her as dead, and this raises the issue of the soul. The soul is a concept that doesn’t exist in Western medicine, but it is a concept of the most crucial importance in the Hmong culture. We have already seen the power the soul holds in Hmong culture, especially concerning Lia’s epilepsy. The soul defines the person in Hmong culture.
We have seen these concepts of personhood and quality of life throughout the semester. The quality of life issue was an integral part of our discussion on disabled individuals. The doctors viewed Lia as dead and therefore her quality of life was automatically assumed to be horrible. However, because of the outstanding care that Lia’s parents gave her everyone noticed how wonderful Lia looked. Despite, Lia’s outward healthy appearance the doctors still viewed her as essentially a vegetable. The issue of personhood has come up while discussing disabled individuals, specifically whether or not having a disability makes one less of a contributing member of society. Personhood is a concept that is still being developed in Western medicine. With new technologies like advanced respirators and feeding tubes, doctors are able to stabilize and keep people alive much longer than they used to. The issue of medicine as prolonging life has come into direct conflict with a person’s quality of life. In 1976 these issues received their first court ruling. Karen Quinlan had been in a persistent vegetative state for months and her parents reached the difficult decision to remove her respirator. The New Jersey Supreme Court ruled in 1976 that her parents had the right to do this. This is an important case because it set the precedent for other similar cases, but I also think that it is interesting especially when viewed compared to Lia’s case. In the Western view a person ceases to be that person when they stop having directed responses to outside stimuli. When a person can longer engage with others and take part in the surrounding world then we no longer consider them to be a person. Furthermore, we also view them as a nonperson because we would not want to be in their situation. The level of care that Lia’s parents provided her with surprised the doctors because of these views. Lia’s parents did not view her as dead, she was still their child; Western medicine on the other hand viewed Lia as dead.
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Mary brought up several excellent points in her “final thoughts” post. In living our day-to-day lives, the notion of personhood falls through the cracks. We perceive of ourselves and our loved ones as “people,” not objects, body parts, or machines. In this view, “personhood” is not merely a collection of anatomical pieces; a person is greater than the sum of his or her parts. We do not question people’s worth and we do not place monetary value on their bodies simply because we love them—to us they are invaluable.
Personhood would remain unquestioned if it were not viewed through the lens of Western economics. When money becomes a factor, we are forced to measure the immeasurable. Capitalism, for instance, works strictly on the principle of valuing personhood. It functions by imposing a monetary worth on people’s ability to produce—how they much or how many products they can construct in a set amount of time. Our American medical system, on the other hand, functions by placing value on body parts. In Sicko, we saw how a finger could be “worth” several thousand dollars, and another “worth” tens of thousands. Neither system views the person as a whole. Both break apart personhood into mechanical bits, and so often we too begin following this example. It takes a family like the Lees, who have no cultural experience in dissecting personhood, and whose society, medicine, and economic system encourages a holistic view of the self, to show Western medicine (and most importantly us) that a child is a child. It took the Lees, a refuge family who could not even read a medicine bottle, to show doctors that Lia was not a thing with epilepsy or a science experiment; she was and is a person. As Fadiman said, “ask not what disease the person has, but what person does the disease have.”
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