Yesterday was a bit of a long day. I finally cleaned up my bedroom and moved the dresser in here from what will eventually become either a "guest room" or my child's room (more on that possibility to come). So I was tired by the end of the day and not thinking clearly enough to write.
An interesting thing happened last night. Someone posted a link to an article about the Infants Born Alive Protection Act on one of the lists for parents of preemies that I monitor and occasionally post on. I had already encountered some information about this during my research about abortion survivors earlier this week. Of course, the preemie parents have quite divergent views on the concept of babies being considered "viable" so early that the chances of mortality and/or extremely severe disabilities are extremely high. They see their children's suffering, which at times is great, and it's natural for a parent to want to alleviate it--and in many cases that means disconnecting life support and letting the child die naturally. As I've said in other posts, I know that somewhere there is a line that must be drawn regarding the time to "let go." If I bore a child prematurely, I would agonize over this line.
What bothered me about the discussion is this. I posted that the law was passed because of abortion survivors and that while I support informed choice I don't support the withholding of medical care in a case like that of Baby Charlotte. Of course, this brought up the question of whether society should be required to support a person who has "no quality of life." Well, if people want a society to be responsible for its members' medical expenses, then my opinion is absolutely the society should be required to support that person's life. It certainly isn't the person's fault she was born so early! Furthermore, there is a difference between not resuscitating when a person has died and withholding temporary breathing support during a respiratory illness. I don't consider the latter to be kind. I have lived with chronic bronchitis/pneumonia for most of the last 12 years. It's terrifying to not be able to breathe; and as I've mentioned before in this journal, humans tend to cling to life.
One parent posted that Charlotte has almost no "quality of life" (and then listed all her ailments) and said that her parents were "divorced from reality." So what does that mean? How many of those ailments (and which ones) would have to be cured in order for her "quality of life" to be considered acceptable? Would it be acceptable if she was receiving oxygen but was able to see and hear normally? Would it be acceptable if she could breathe normally but was not able to see or hear? (I shudder at that thought!) So it's ok for parents to have the right to choose death for their child, but it's not ok for parents to have the right to choose life when the rest of the world thinks they're "divorced from reality?" In other words, "informed choice" really isn't the issue at all here. It's only the issue as long as the right to refuse treatment is protected. After all, a truly informed and well-educated person wouldn't want to live "like that" and wouldn't want it for their child. In other words, a certain measure of health is required for a person to be considered worthy of life because we healthy people don't want to be responsible for you worthless disabled people. And that line has a way of creeping so that more and more health is required in order for a person not to be considered a burden. What would some of these parents say if they knew that this well-educated person is receiving SSI and is likely to have difficulty holding down a standard full-time job because of health concerns. Should society be required to support me as they do now? Or should that be my family's responsibility solely? I'm a person with disabilities who is supported by the United States government. Am I worth supporting just because I have a mind that is capable of turning my thoughts and feelings into words?
Btw, for those who want objective information, the text of the act and various reports and summaries are available at http://thomas.loc.gov/cgi-bin/bdquery/z?d107:h.r.02175:.