With JL, let me heartily recommend my friend Helen Rittelmeyer’s initial sketch of a bioethics that “sees love, not autonomy, as the basis of human dignity”. It’s a challenging read, but well worth the work. Perhaps due to what I’ve been blogging about of late, this paragraph was probably my favorite:
There is a strong temptation to say, very simply, that these sorts of decisions are family affairs and none of the public’s business. However, the answer is not as simple as recognizing a family’s right to privacy, as the case of elective abortion makes clear. The decision to carry a disabled child to term means something very different depending on how ordinary or extraordinary the decision is. The public’s attitude towards children with Down Syndrome is not the same when 15 percent of women choose to abort such children as when 90 percent do. (The exact figure in the United States is 91 percent.) If elective abortion continues to be the overwhelming norm, the child’s disability will come to be seen as something the mother brought upon herself rather than as something she simply accepted. The assumption will be that no normal woman would have borne the child since, after all, normal women don’t. This same shift—from seeing disability as a family’s fate to seeing it as a self-inflicted burden—will naturally follow if more quadriplegics follow the example of Daniel James, the British rugby player who ended his life at the Swiss clinic Dignitas after an injury left him paralyzed. (Dignitas has ended the lives of more than a hundred Britons since it opened ten years ago, and, in that time, not a single spouse, relative, or friend has been prosecuted for the legal crime of assisting them.) The difference between ordinary and extraordinary measures is an important moral one; it determines the moral—and therefore legal—expectations we have of our neighbors and ourselves. These private decisions have public consequences.
Read the whole thing.
RG 
Matt C 
eep 
G. Smiley 
Individual autonomy is a strong component of the American character, reflected both in our myths (cowboys, immigrants) and in our Constitution, esp. the 5 and 14th amendments.
What I find astonishing about certain kinds of social conservatism is the whiplash-inducing changes in the role of the state.
“These private decisions have public consequences,” writes Ms. Rittelmeyer, regarding assisted suicide and abortions following DS diagnoses.
Therefore?
That question is unanswered. But the author later states that by resenting self-discipline our society will become painless and pointless.
Well, since that’s unacceptable, something need to be done! But what? What should the state do? The better question is why nominal conservatives want the state to play any role at all.
Also, the concept of autonomy does not get fairly addressed in the piece, especially in the examples of assisted suicide and juvenile deafness.
When a person is denied the opportunity to assist in a suicide, the state is depriving two competent adults of their autonomy — the person seeking death and the person offering assistance. The beneficiaries of that decision are unclear; they appear to be an amorphous group of largely devoutly religious people who believe that the decision belongs to a god along with people, like the author, interested in disability issues who believe that the choice of suicide harms those who want to live with that condition.
“We love you so you can’t be allowed to have help killing yourself” is a pretty thin thread on which to hang the argument for state intrusion into the issue of suicide.
As regards the issue of cochlear implants, forcing a person to wait until he’s 18 to have the right to decide for himself whether he wants to participate in the community of the hearing is a life-changing decision. We wouldn’t allow a blind family to actively blind a normally sighted infant. Nor do we permit female genital mutilation on a child. Yet in both those cases, “without it, the child would grow up a stranger in his own family.” Is active vs. passive a strong enough basis to make this distinction?
Put simply, across America we deprive parents of their rights to limit their own children’s autonomy all the time. And the reason that we do it is that over the years, as these kids hit adulthood they went to their legislatures and asked a simple question: “How could you let my parents do that to me? Where was my right as a juvenile citizen to have the chance to live a normal life?”
(see, eg, Ireland.)
Sacrifice, we are told, is a good thing. But too much of the post is about the author deciding what sacrifices other people should make, so that she feels better about her relationship with her sister.
If sacrifice is so important, she should be willing to sacrifice her own desire to be seen as a hero, and let everyone else have the life that they want.