Even as Americans are coming to terms with the complexity of end-of-life issues and the challenges of medical technologies, the lack of a worldview consensus on these basic questions reveals a dangerous confusion at every level of our national life. Doctors, lawyers, philosophers, and the public at large are divided over the most basic questions of human dignity, human life, and how to make decisions of right and wrong when these are essentially questions of life and death.
The tragedy of Terri Schiavo catapulted these questions into the nation’s consciousness. Nevertheless, it is by no means clear that the nation learned anything of significance through that tragedy and the attendant controversy. Indeed, a large number of Americans seem to be relieved that the tragedy of Terri Schiavo is safely out of mind and off the headlines.
Lennard J. Davis argues that the controversy over Terri Schiavo revealed a dangerous lack of “biocultural literacy” among the American people. Davis serves as Professor of English, Disability and Human Development, and Medical Education at the University of Illinois at Chicago, where he also directs Project Biocultures. The complexity of Davis’s professorial title indicates something of the strangeness of his academic post.
In “Life, Death, and Biocultural Literacy,” published in the January 6, 2006 edition of The Chronicle of Higher Education, Davis argues that the absence of biocultural literacy in the academy and in the general public leaves us all unable to cope with some of our most pressing contemporary questions.
Davis begins his essay by looking back to Victorian literature in which novelists such as Charles Dickens portrayed death as the moment when one’s identity “often comes to fruition.” He contrasts this with today’s clinical context of death. “But while Dickens had metaphorical hearts and angels to enhance self-revelation at the time of death, we have ventilators, feeding tubes, and defibrillators. Death for us isn’t so much a final revelation of identity as a series of decisions preceding a finality.” As Davis concludes, “Our sense of identity is much less clear than it was for people in the past.”
In that assessment, Davis is clearly on to something. Americans are no longer united in a worldview shaped by Christian truth that establishes identity and human dignity in Creation and in the reality of the image of God in every single human being.
Looking at the contemporary debate, Davis notes the contrast between liberal and conservative arguments. “Liberals might argue that one’s identity ceases to exist with the loss of a certain level of consciousness, accompanied by the necessity of mechanical life support, such as a feeding tube and a ventilator.” On the other hand, “The religious right contends that one has an identity as long as one’s heart is beating, regardless of one’s cognitive function or the need for external life support.”
Accordingly, some persons looked at Terri Schiavo and responded with the fear that they might at some point be reduced to being a “vegetable” with no consciousness or personal identity, while others looked at the same situation and feared the termination of life while one’s brain is still functioning and death is otherwise not imminent.
As Davis understands, a surge of interest in “living wills” was one practical result of the controversy. Nevertheless, these documents often fail to deliver on their promises, are often ignored by medical professionals, and often fail to protect the interests of the one who adopted the document in the first place.
Davis seems to believe that a greater depth of knowledge in all the related fields of medicine, technology, biology, religion, psychology, and law would lead to a better understanding of the moral questions involved in such crises. Beyond this, he would add disability studies and the relatively new field of bioethics.
There is undoubtedly some truth in his assessment. For example, when Davis asserts that most Americans “know very little about biology, don’t keep up on recent developments in neurology, and barely know the difference between a coma and a persistent vegetative state,” he is clearly describing a reality we can recognize.
Yet, Davis’s main concern is with the absence of an academic discipline that adequately integrates all the fields that have an interest in such questions. “The public historically has turned to scholars and researchers to inform difficult public debates,” he notes. “But it isn’t really clear what part of the academy should be the go-to profession or department.”
The bioethicists are ready to offer their advice, even as philosophers and political theorists are ready to speak of such questions in terms of justice and liberal theory. Davis also suggests that the field of disability studies, which is “beginning to pull together several disciplines to address the philosophical, moral, legal, medical, and cultural questions emerging from the intersection of biotechnology and identity” can offer important advice.
At the same time, Davis doesn’t believe that either of these academic disciplines is adequate to the task. The field of disability studies, he explains, “is fundamentally based on, among other things, the idea that people with disabilities should have autonomy over their own lives.” Bioethics, which emerged in recent years as an academic specialization, takes as its goal to promote a notion of patient autonomy as opposed to the previously unchallenged authority of the medical profession.”
The very fact that Davis has framed the debate in this manner demonstrates the inherent limitations of our concept of personal autonomy. For, as he is careful to observe, the bioethicists and the disability advocates generally ended up on opposite sides of the debate over Terri Schiavo. Though both were operating on a basic commitment to personal autonomy as the greatest good, the bioethicists tended to locate the autonomy in Terri Schiavo’s supposed wish to avoid living in any state of diminished consciousness (at least according to her husband), while the disability advocates saw her as a symbol of what happens when those who are debilitated or disabled are assumed to lack the ability to act on their own behalf. As disability advocates saw Terri Schiavo’s situation, here was an example of a human being denied a basic right to life on the basis of diminished capacity.
If nothing else, the controversy over Terri Schiavo demonstrated that personal autonomy is simply not a sufficient foundation for any medical ethic or understanding of human dignity.
Davis seems to understand this, at least in part. He cites the fact the bioethicists fear government intervention or the influence of religious groups because this might threaten to “muck up the principle of patient autonomy.” But, at the same time, he also explains that “autonomy is a somewhat limiting principle, despite its obvious utility, if you think of the issue not as what a legal guardian wants, or says a patient wants, but as what or how a society defines ‘a life worth living.’”
As an answer to this lack of national consensus, Davis suggests the development of “biocultural literacy.” While this term is never fully defined in his essay, Davis obviously has in mind an integrative approach that would bring together political, cultural, medical, scientific, and religious implications of hard cases and matters of life and death.
One of the central problems in Davis’s proposal is that his concept of biocultural literacy requires a simultaneous knowledge of so many disciplines and fields of study that no single individual, much less the man or woman on the street, can be expected to be conversant, much less an expert, on such matters. Nevertheless, the larger problem with this proposal is Davis’s confidence that an academic field of study is the proper arena for such questions to be adjudicated and such decisions to be made.
His approach does promise key insights when it takes the form of cultural and theoretical analysis. In an interesting section of his essay, Davis attempts to identify some of the strengths, weaknesses, and inconsistencies of positions taken by both liberals and conservatives on these crucial issues. He cites the fact that conservatives historically have supported individual autonomy against the state and thus the Right “has generally opposed federal intervention in individual states’ rights.” But in the case of Terri Schiavo, conservatives did seek federal intervention, arguing that Terri Schiavo’s inherent right to live was far more important than her husband’s supposed right to speak on her behalf in terms of moral autonomy.
“For the right in general and the religious right in particular, one’s identity is based on the sanctity of life, extending to patients in comas or vegetative states, fetuses in the womb, and byproducts of fertilization such as stem cells and unused embryos,” Davis explains. “But any logician could inform the debate by pointing out the inconsistency between these positions and support for the death penalty, war, and even the eating of animals.”
If this is “biocultural literacy” we are in big trouble. Davis must be unaware of two millennia of Christian thinking on these issues that carefully makes distinctions between the very issues that he raises. If this is a demonstration of biocultural literacy at work, it is a dismal and embarrassing failure.
Davis also argues that, even as liberals favor autonomy with respect to the body and resist “the idea that the state should dictate how and what we do with our bodies,” it runs into conflict with its own basic principles when faced with the hard questions related to disability and those who are unable to express their own intentions in terms of personal autonomy. Furthermore, he rightly observes that, “because of biotechnical advances, the line between inside the womb and outside the womb has become somewhat arbitrary and largely a matter of conjecture.” So, on matters at the beginning of life as well as at its end, liberals should be forced to rethink their positions based upon developments in science and medicine.
In his essay, Davis is addressing himself to the academic community. “In the end, we are all poorly served by an academic community that does not promote biocultural literacy,” he argues. “As this century moves on, many issues the public needs to discuss will increasingly be tied to biotechnological advances that challenge our definitions of what it means to be human. We will need all the resources that we can command to come up with consistent, logical, and culturally relevant ways of conceiving of and bidding farewell to our bodies, ourselves.”
The Christian worldview, however, must press beyond a notion of “biocultural literacy.” If nothing else, Davis’s article should assist serious Christians to understand the limitations of personal autonomy as the foundation of any ethical system–much less an ethical system related to the excruciating questions that now arise at both the beginning and the end of life. The Christian worldview must point to a more comprehensive ethic–something even more demanding than biocultural literacy–that is based in a consistent affirmation of what it means for human beings to be made in the image of God and for all human life to be of sacred value–without regard to an individual’s ability to operate as a supposedly autonomous being.
Here again, we can foresee a confrontation between Christian and secular modes of thinking on important issues of public policy. Yet, there is more here than meets the eye, for this is also an opportunity for Christian witness, as thinking Christians should enter this debate ready to explain why we must define human beings in terms different from those of the secular academy. In its own way, this may be one of the most important avenues for Christian witness in our postmodern times.