A Dose of the New Medical Reality

Schiavo as Symptom

On Thursday morning, March 31, 2005, Terri Schiavo died quietly in a Florida hospice. The person who Terri Schiavo had been ceased to exist 15 years before, according to the testimony of her husband and many who knew her, as well as the best determination of credible doctors and scientists. The memory of Schiavo will make its home in the lives of the people who actually knew her for years to come. And no doubt the public figure of Schiavo will likewise continue to resonate into the future, condensing into a few flashes of ineradicable imagery what are in fact the endlessly complex and emotionally fraught quandaries of bodies and lives rendered newly questionable in their limits, capacities and social intelligibility by ongoing and emerging technological developments.

So long as medicine is conceived primarily as a remedial enterprise its recommendations are driven most conspicuously by the straightforward instrumental rationality of what consensus science takes to be relevant causes and effects. What “health” consists of in the first place and what is desirable about the maintenance of that state are to an important extent simply treated as if they are "givens." But as our prosthetic practices proliferate the ways in which people can live "livable" lives, we look less and less to medicine to remedy the ways in which our bodies deviate into pathological difference and more and more to deliver us into differences we desire.

Of course, the goal of producing and maintaining a "healthy body" through medical and hygienic practice has never in fact been the instrumentally neutral ideal painted in such a picture. Our diagnoses of disease, infirmity, fitness, and illness have always been ineradicably freighted with cultural and moral significance. But what I mean to call attention to here is that the scope and force of ongoing and palpably upcoming medical intervention is deranging our sense of the standards against which we would strive to measure the distance of the variety of actually living human bodies from the "normative" body we would traditionally impose and maintain through recourse to that medicine. Already, we cannot be quite sure what we are capable of or what we can rightly expect or demand of our newly queer, prostheticized bodily selves.

Medicine is taking humanity on an unprecedented path from remedy to self-creation. But our assumptions and our language have not yet managed to keep up with this emerging state of affairs. Meanwhile, our hopes and desires and sometimes our demands for medicine often seem to range hyperbolically forward past our present capacities.

The heartbreaking and hysterical public spectacle of the dead but surreally lively prostheticized body of Schiavo attests to our perplexity and our present distress. There are many such spectacles to come.

Human-Racism and the “Bright Line” Between Life and Death

In an influential editorial prompted by the Schiavo case, David Brooks claimed at the time to discern as the main difference between conservative and progressive bioethical discourse that only conservative bioethics is properly moral in its concerns while progressives are somewhat blind to the "values" dimension of policy.

This is, of course, just the sort of dismissive or oblivious attitude we have come to expect public conservative figures to take whenever they encounter values with which they disagree. (One recalls, for example, in the immediate aftermath of the catastrophic 2004 Presidential Election the conjuration by many conservative pundits of a so-called "Values-Voter," which seemed to describe as "moral" only that segment of the American population that hated gay people enough to be mobilized by their pathological homophobia to vote for a second term of America’s most disastrous Administration, quite palpably against their own stated interests on many other social questions.)

But it is worthwhile to set aside our reasonable annoyance at the tired dishonesty and craven partisanship evident in his rhetoric, because Brooks' discussion of the differences in the ways many conservatives and progressives talk about the dilemmas of a case such as Schiavo's does in fact highlight important moral, cultural, temperamental distinctions that illuminate what I have called the emerging terrain of bioconservative and technoprogressive positions on technodevelopmental social struggle as well.

Brooks claims that "[t]he core belief that social conservatives [have]... is that the value of each individual life is intrinsic. The value of a life doesn't depend upon what a person can physically do, experience or achieve. The life of a comatose person or a fetus has the same dignity and worth as the life of a fully functioning adult." Against the social conservatives, he suggests that progressives hold as their own "core belief that... quality of life is a fundamental human value." Progressives don't, Brooks accuses, "emphasize the bright line between life and death; they describe a continuum between a fully lived life and a life that, by the sort of incapacity Terri Schiavo has suffered, is mere existence."

To the extent that this emphasis on the “bright line between life and death” seems not to nudge conservatism into a nonhuman animal rights position, and to the extent that it explicitly refuses elaboration through a discussion of quality of life (which apparently is somehow “relativist” compared to the bright brute line of “life and death” or just plain “liberal” and hence inherently questionable in some unspecified way), it is clear that the foundational gesture of bioconservatism is a straightforward human-racist emphasis on the presumably “intrinsic value” of the process of metabolism when it is incarnated in representatives of only the human species, even if that process itself is indistinguishable, as a process, from the life incarnated in indefinitely many living species.

Of course, there is in fact a progressive moral value quite as luminous as anything he would attribute to conservative human-racist moralists that is rumbling in the background of Brooks’ discussion here, a value he seeks to trivialize through the comparably anemic phrasing of “quality of life.” This value is widely and passionately affirmed, and the recent track record of conservatives in the defense of this value, and of the more “fully-lived” lives that depend on it, is troubling indeed, whatever their occasional lip-service to the contrary.

That value? Consent.

Denigrating Lives by Denigrating Consent

One has to wonder just why it is that conservatives proud to "err on the side of life" seem so regularly impelled in so doing to denigrate consciousness and violate consent.

For progressives, there is indeed a texture in personal life beyond the "mere existence" we share with shrimp and snails, and which demands broad affirmation on its own terms. Personal lives are uniquely lived in the webs of meaning and thought and conversation woven by public beings, lives that reverberate with choices, with desires, with injuries, with deeds.

All the while the armies of the conservative so-called "culture of life" seem to defend life only in some more vegetable or mineral mode always best exemplified by organisms that have not yet arrived among the community of poets and peers, or of those who have already departed from the scene.

Brooks proposes that "[t]he central weakness of the liberal case is that it is morally thin. Once you say that it is up to individuals or families to draw their own lines separating life from existence, and reasonable people will differ, then you are taking a fundamental issue out of the realm of morality and into the realm of relativism and mere taste."

But to denigrate the morality of consent as "the relativism of mere taste" is to confess a complete moral blindness to the way in which we actually want to do morality here in democratic civilizations these days. And it follows as the night does the day that those who denigrate consent will go on then to denigrate the dignity of actual democratic citizens with whom they happen to disagree. Notice how often "erring on the side of life" seems to conservatives to require a violation of the terms in which citizens with whom they disagree actually choose to live their own lives.

I think it is fair in fact to agree with Brooks when he goes on to declare that for the conservatives in Bush's America "[t]he life of a comatose person or a fetus has the same dignity and worth as the life of a fully functioning adult."

That is to say, not very much.

Conservatives really do seem to adore claiming to speak for nonpersons (especially fetal not-quite-yet persons and stubbornly vegetative no-longer-quite persons) who cannot speak for themselves. How dearly they seem to love to put words into the mouths of those who are in no position to protest the imposition. What better way, after all, of multiplying their own voices in a world where sprawling majorities of actual people simply disagree with them, than to claim that their own overpowered voices stand in fact for countless voiceless voices as well as their own?

When conservatives seek to extend the dignity and status of the citizen to nonpersons they inevitably impoverish the exercise of that status for actually-existing citizens. This, of course, is the point of the exercise. Given the contours of Brooks’ argument, what is paradoxical is that in ascribing "dignity" so broadly it is the social conservatives themselves who stretch morality as thin as the skin of a soap bubble -- the better to puncture its fragile skin.

And it matters little to conservatives that their own morality is finally so thin since ultimately they seem to prefer to turn for their moral guidance to the dictates of authorities claiming to speak for God, or Tradition, or Homeland when all is said and done, than to the more contingent contentious verdicts of their own best worldly and reasonable deliberation.

Now, consent is indeed a notoriously thorny value to implement since its exercise, to be legible, demands that it be competent, informed, and nonduressed.

In the absence of competence, adequate and trusted information, and freedom from duress the “scene of consent” is apt to be a scene of violation in which the vulnerable rather than the violators are treated as guilty perpetrators of the violations they themselves suffer: As if a child has somehow “consented” to sexual abuse from a trusted authority figure. As if a consumer has somehow “consented” to the risks of a toxic, addictive product if its makers and marketers have fraudulently declared it healthful and nonaddictive. As if an impoverished or dependent wage-earner freely “consents” to exploitation at the hands of a wealthy or independent employer.

But the difficulty and danger is that securing a scene of legible consent for all citizens requires the formulation and application of the standards through which competence, knowledge, and freedom from duress are recognized as such. And this indispensable project inevitably risks mistaken formulations and misapplications that might actually violate particular performances of consent in their extraordinarily overabundant diversity and dynamic proliferation.

What Brooks mistakes as the “relativism of mere taste” is in fact the fraught and demanding dignity of diversity, the morality of self-creation, and the project of interminable criticism and self-criticism. Progressives know that they must accept a costly measure of abiding doubt and vigilance as the fair price that would help assure that our standards protect the changing life of consent rather than policing difference into conformity in the name of a “dignity” that always speaks in the voice of established authorities or in the easy, nostalgic, but stultifying voice of the past. Since conservatism is at heart a preference for obedience over critical autonomy it is scarcely surprising that conservatives would denigrate consensual self-creation as “mere taste” or mistake confident critical uncertainty as “relativism,” but it is a curiously delusive spectacle when they go on to peddle their obedience as independence, their complacency as dynamism, their faith as knowledge, and their humiliation as dignity.

From “Disability” to Diversity

Technoprogressives maintain that technological development is becoming not just a disruptive but, potentially, a genuinely revolutionary force. Technodevelopmental transformation undercuts the normative weight of claims made in the name of the "natural" in ways that, conjoined to a deepening of democracy and extension of fairness, technoprogressives insist can be made to be ultimately emancipatory for all.

For technoprogressives, the ongoing revolution in reproductive medicine and emerging genetic and neuroceutical medicine opens up consensual prosthetic practices of self-creation that will be this generation's historical contribution to the ongoing conversation of humankind.

I use the term "morphological freedom" to describe the ways in which consensual prosthetic practices are enlarging the scope of personal freedom, even while they derange our expectations, demand new responsibilities, and introduce unprecedented possibilities for injustice, violation and harm against which we must struggle interminably.

Along with many other progressives I felt disgust at the public figures who so loudly and cynically attached themselves to the distress of the family of Schiavo in bids for personal attention. I worried together with other techno-progressives about the widespread American anti-scientific benightedness that blistered yet again to the surface of public discourse in the midst of the media circus, connecting up in the most ominous imaginable ways with conservative hostility to evolutionary science via the rhetoric of "intelligent design," hostility to environmental science via the rhetoric of climate-change denial, hostility to social science via the rhetoric of "abstinence-only education," and hostility to economic science via the rhetoric of market fundamentalism. And of course I shared the concerns of other liberals about legislative efforts to bypass the courts, insinuations of martial law, and all the rest.

But I also share the concerns of many "disability" advocates who found themselves at odds with some of the progressive and most of the technoprogressive consensus in this cultural moment and who worry that there is something quite pernicious in the conventional liberal discourse that claims that if only Schiavo had a real "chance at recovery" then liberals, too, along with social conservatives, would be demanding that her "life" be protected and preserved.

These advocates for the differently enabled are rightly suspicious that the idea of "recovery" in such arguments mobilizes what amounts in fact to a highly restrictive normative concept of the sort of lives that are ultimately "lives worth living." Too often the notion of a properly "livable life" is a concept that denigrates many differently enabled people who, whatever their struggles or sorrows, live lives suffused with dignity, joy and value worth affirming and supporting the same as anyone else's.

Now, I strongly agree with the clinicians and experts whose thorough and repeated examination of the evidence located Schiavo's body in particular decisively with the dead rather than with the disabled. And in any case, I would insist like most progressives do on the absolute moral necessity to respect her own decisions and attitudes in a case like this, however these have been best ascertained by a number of courts, where matters of the care of her own body are concerned.

But it is clear nevertheless that the figure of disability was circulating in the Schiavo case in ways that matter to advocates for the differently enabled as well as to advocates and scholars of morphological freedom.

There are many "disabled" people who will seem superficially similar to Schiavo to an untrained eye, after all, and whose lives are routinely dismissed as "not worth living" in consequence. Advocates for the differently enabled fight heartbreaking, exhilarating battles to champion the rights and standing of these people every single day.

What it must mean to respect the differently enabled as the actually fully real people they are is to respect them and support them in their differences whenever they affirm the value of these differences on their own terms, just as it must likewise require the best provision of prosthetic avenues for rewriting their bodies and lives in the image of their own desires, also on their own terms, to the extent that this is possible and wanted by them.

Consensual Prosthetic Practices

The process of "life" in medical technocultures is one of ongoing practices of genetic, prosthetic and cognitive modification in pursuit of personal meanings, responsibilities, and pleasures that are bound to strain against the imposition of normative conceptions of "wellness," however construed.

From the perspective of morphological freedom it seems to me the standard of "recovery" is always therefore worrisomely conservative, naturalizing some contingent standard of proper health as more desirable than indefinitely many alternate possibilities. Morphological freedom is never properly a matter of any coercive imposition of a normative body in the name of a moral standard of "health," but is an embrace of genetic, prosthetic and cognitive modification practices in the name of a proliferation of ways of being properly and meaningfully in the world.

To the extent that the rhetoric of "recovery" impels us to misrecognize some manifestations of diversity as "disability," technoprogressives seem to me well rid of it. And to the extent that technoprogressives will sometimes affirm the desirability of "better than well" healthcare provision this would seem to encourage a repudiation of the discourse of "recovery" as well.

It is especially interesting for me to note the extent to which so many of the differently enabled depend on ongoing cyborgization and prosthetic practices to find their ways to more enriching lives on their own terms: communicating through computer interfaces, locomoting in motorized conveyances, and engaged in sometimes lifelong medical procedures of extraordinary intimacy and profundity.

Now, these considerations do not nudge us into any kind of blanket morphological relativism, since we will still prefer and testify to our own personal paths of self-determination on the basis of reasons at least intelligible enough to satisfy the conditions of informed, competent, and nonduressed consent. And in any case the proper public provision of the resources that enable prosthetic practices of self-creation also demands the maintenance of intelligible standards to ensure democratic accountability, fairness, security and meaningful deliberation in that provision.

Morphological freedom prevails to the extent to which discernible differences among peers arise from consensual prosthetic practices of self-determination or self-creation, rather than being imposed or unduly duressed by conditions of exploitation, violence or ignorance (any of which might broadly mobilize responsible intervention). What will be key for a properly technoprogressive bioethics that affirms morphological freedom will be a shift in focus from a moral(istic) concern with parochial standards of health, beauty or custom into an ethical concern with the meaningful consent of peers with whom one may or may not identify morally in the slightest.

This essay is a revised and edited version of a column published April 1, 2005 -- the day after Terri Schiavo died -- on Betterhumans.com. That column contained material from a number of shorter texts that I had already published on this blog during the height of the discussion of Schiavo case. All of that material should be accessible through the archives here.