| Summary: | 碩士 === 國立東華大學 === 族群關係與文化研究所 === 94 === Ethical caring is a kind of mutual relationship which can be easily observed between parents and children. However, it is not necessarily a set of moral obligations, nor does it exist automatically, because in some cases, ethical caring is apparently neglected, or even completely given up in times of difficulties. For example, a child with severe cerebral palsy may have mobile handicaps which hinder him or her from sitting, standing, walking or using his hands. Parents must face a numerous challenges following the birth of the child.
If ethical caring is not a set of moral obligations, from where is it empowered? Is it only a subconscious behavior or just an instinctive interaction between parents and children? In this study, I have spent much time observing two families with severe cerebral palsy children. Parents must have patience and perseverance to overcome feeding problems, sudden seizure and several mobile obstacles. In moments of extreme desperation, they even consider whether they should give up or spare no time, no cost, and no effort, just to go on.
To understand the dilemma in which parents are entwined when they take the responsibility for caring for the severe cerebral palsy child, I use the phenomenological and hermeneutical methods of Emmanuel Levinas to analyze their attitude in situations. Besides, I have conducted several interviews with parents and children as well as paid frequent visits to their homes to observe their actual events in real life.
From the first encounter of ethical caring, parents have been haunted by the question of whether to save the newborn’s life or not. After all, is it reasonable for a severe cerebral palsy child to grow up and face a hopeless, or maybe an extremely miserable future? Or, is it worth it for parents to sacrifice their own family life and welfare? Does a severe cerebral palsy child bring out the best or the worst from parents’ human nature? What meanings does the ethical caring inspire to our current world in which the jungle rule of natural selection and survival of the fittest prevails?
From his or her birth, a severe cerebral palsy child has to undergo several hassles of medical diagnosis to make sure of symptoms. After surviving the stages of feeding problems, he has to face the frustration of what school he can attend to receive a formal or normal education. Then, when the rehabilitation seems to have been desperate, they have to make a decision whether to receive experimental methods as a guinea pig?
During the trying process, the care-giver responsible for the ethical caring has in fact become an ethical subject. On one hand, he or she has to grasp any twinkling hope of rehabilitation before their financial and spiritual resources are drained; on the other hand, he or she must ask themselves what power they can depend on to keep going (on/) . Do they believe in Christ’s love, Buddha’s charity, or Chinese traditional ethical values? In other words, what the ethical subject is faced with is his or her own “ being”. The answer to the question of whether to be or not to be is found in how they interact with “ the other ” . Symbiosis in the family can sometimes strengthen the meaning of our being instead of weakening it. This is an important theme I must point out in studying the phenomena of ethical caring.
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