NO MAN IS AN AUTONOMY:

Knowing our minds: For many, the Schiavo case hinged on the right of individuals to control their own fates. But when it comes to extraordinary medical decisions and the ordinary business of living — the ideal of individual autonomy is not so simple. (Michael Bérubé and Janet Lyon, April 3, 2005, Boston Globe)

On one hand, the ideal of autonomy is fundamental to any idea of democratic society. When we recognize and respect the sovereign and considered wishes of others, even when we do not agree with them, we accord other people a measure of human dignity; and when we express our own similarly considered wishes, we hope that we will be understood in turn, even if our desires aren't always fulfilled. Without autonomy, there is no human freedom, no human dignity to speak of. And everyone, it seems, champions greater autonomy for people with disabilities: liberals, because social justice demands as accessible a world as possible, a world that makes reasonable accommodation for everyone; conservatives, because greater autonomy for individuals with disabilities means less reliance on the mechanisms of the state; and libertarians, most obviously, because they insist on individual autonomy as the greatest good.

But on the other hand, autonomy is vastly overrated. As philosopher Eva Kittay has argued, our culture's overemphasis on the ideal of autonomy makes it difficult for us to think clearly about dependency. More precisely, we tend to think of dependency as a sign of incompleteness, immaturity, and even moral failing; it is frequently associated with people who sponge off their relatives (or the state), people with nasty drug habits, people without the desire or the capacity to fend for themselves. When autonomy is the unquestioned ideal, dependency can only be an aberration or a scandal.

The challenge for disability scholars and disability rights advocates, then, has been to try to convince their fellow humans that dependency is one of the incontrovertible facts of human lifenot only at the beginning and the end of life, when our dependencies are manifest, but every time we participate in large-scale forms of organization. Few among us, surely, pave their own roads, inspect their own meat, or build their own sewage systems. We are social and interdependent beings, which is to say that no one is truly autonomous, and in a culture that idealizes the ''self-made man,'' we have to keep reminding ourselves of that.

For all of us, in other words, autonomy is at once indispensable and insufficient, and this is especially so for people with disabilities. Without autonomy, the disability rights movement makes no sense: From its beginnings in the Bay Area in the late 1960s, disability activism in the United States has centered on the importance of individual autonomyand the moral imperative to alter physical and social environments so that people with disabilities can exercise that autonomy and participate more fully in the life of the nation. Ramps, kneeling buses, curb cuts, inclusive schooling, job coachesthese are not just social Band-Aids, but the stuff of democracy's utopian dreams: Another world is possible, a world in which all are valued.

At the same time, however, there are any number of people with significant intellectual or physical disabilities who will never be fully autonomous; for such people, autonomy merely holds the scales in which they will be weighed and found wanting. And for such people, surely, some more supple measure of human dignity is required. [...]

It's possible, as some disability advocates would argue, that before his injury Robert Wendlandlike many nondisabled peoplehad an inordinate fear of disability, and perhaps for him there was a strong link between disability and shattered masculinity. This is hardly surprising, given the pervasive stigma associated with disability. Furthermore, it's possible that even a person as severely incapacitated as Robert Wendland may come to change his way of thinking about life, or his life prospects.

This is part of the problem with advance directives: People might, in fact, change their minds, and to entertain this possibility is only to respect their autonomy. But when their ''mindedness'' is precisely what's in question due to significant brain injury, then the problem of autonomy becomes impossibly complex.

It's not really that complex--in morality, human dignity always trumps autonomy even where decisions affecting only the self are concerned. Our autonomy has been limited by God.

Posted by Orrin Judd at April 10, 2005 9:56 AM