Wednesday, March 23, 2005

When is a Person Not a Person? 

In the face of several "all Terri Schiavo, all the time" blogs I have left a trail of various comments and thought I'd repeat my main thoughts here.

I'm big on understanding assumptions and stripping an issue to its basics. When I do that with this matter what it seems to boil down to is that a severely mentally disabled person is having their nutrition and hydration witheld so they will die and that the basis for this decision is what amounts to hear-say evidence offered by a party whose motives have been questioned by some. There is understandably much emotion surrounding the matter, but I have been most surprised by the vehemance with which some feel the decision is 100% right. There are several points, though, that these most ardent supporters seem to either be ignorant of or intentionally disregard.

First, there can be little doubt that there is a fundamental difference between a "feeding tube" and what is commonly thought of as "life support." There are many people who basically lead completely normal lives with the exception of requiring a feeding tube to supply nutrition due to esophogeal or other problems. By a similar token, would a colostomy bag be considered "life support"? There are even more who suffer some degree of disability including the need for a feeding tube. My nephew, for example, has what I consider fairly severe Cerebral Palsy and had to have a feeding tube installed due to problems with swallowing and reflux. The main differences between him and Terri Schiavo (besides sex and age) are the source of their disability, their relative ability to communicate and the attention and desires of their designated guardian.

Second, there is also a fundamental difference between a mentally disabled person and someone suffering from a terminal medical condition. Leaving aside the fact that we are all dying at one rate or the other, there is nothing physically wrong with Terri Sciavo that threatens imminent death. For this reason, while I can understand their feelings, I cannot accept the numerous personal accounts of relatives dying of cancer or 90 year-olds refusing to eat as relevent to the matter at hand. If anything it is more akin to a hunger strike.

Except, of couse, that a hunger strike is something one undertakes of their own will and action. In this case one of the few undisputed facts is that we do not positively know Terri's desires and wishes nor were they ever unequivically recorded for our review. A common argument made is that "I wouldn't want to live like that," an argument I also largely dismiss as irrelevent. I do not doubt that individual's sincerity at this moment in time, speaking from a position of health, but there are also many men in the VA who once just as strongly felt it would be better to never come home than to come home "half a man." We can make predictions and assumptions, but I don't believe you can really know where the line between lack of quality and love of life itself lies until you find yourself at the crux. And in any event, the question was never what would these people want to do in this circumstance, but, rather, what does Terri want to do? And we can't answer that for sure.

In watching my nephew grow and develop I have often returned to a thought I first had as a child when I began realizing that in addition to me and my (generally) smart friends there were other kids at school who fell on the other side of the bell curve, some quite far on the other side. To what degree does a disabled person recognize their difference as a disability? For those who are higher functioning, people with Down's Syndrome, for example, the difference is more accutely recognized and we know this because the individual is able to communicate their thoughts and feelings in a way we understand. For those with greater disabilities, though, this communication is less perfect and more guessing is required. In the case of my nephew, I think he probably knows we function differently and he seems at times frustrated he cannot do some things he wants, but if that frustration is related to an understanding of his disability or simply based upon his inability I can't tell. As the communication becomes less, for example as in Terri's case, at what point do we cease caring about their perceptions? The whole "I wouldn't want to live like that" argument rests upon the assumption that should you be in her condition you would be aware of the difference between what you once were and what you had become, an assumption that is completely unfounded and without basis.

So what I really see in the Terri Schiavo matter is an assumption of non-personhood based upon a lack of communication. While we may agree that a kitten or puppy does not posess self awareness like a human we would still shy away from purposefully withdrawing nutrition and hydration simply because it could effectively communicate its discomfort and its desire to live. Terri, in the eyes of the court, can do neither and is therefore not afforded the same consideration.

I wonder, based upon this precedent, what would be the difference between this and if my sister just stopped putting food in her son's feeding tube? In both cases the legal guardian would have made a decision that the disabled person was better off dead. And neither disabled person is in a position to effectively argue otherwise. Once we cross this Rubicon what other non-terminal situations could conceivable merit withdrawal of nutrition and hydration? In the absence of clear evidence the action is in compliance with Terri's wishes, the witholding of nurishment and hydration from an otherwise physically healthy person feels too much like passing a death sentance against one simply felt to be less than human and therefore one whose life is of lower value and importance. I have a severe discomfort with any government willing to make those decisions concerning its law abiding but disabled citizens.

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