[Paleopsych] BH: A Dose of the New Medical Reality

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A Dose of the New Medical Reality

The debate over Terri Schiavo highlights emerging dilemmas of morphological
freedom as medicine changes our lives and limits

    By Dale Carrico
    4/1/2005 2:47 PM

    On Thursday morning, March 31, 2005, [8]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 [9]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 in profoundly meaningful ways for many 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 remained primarily remedial, its recommendations
    were driven most conspicuously by the instrumental rationality of
    causes and effects, and our best assessments of just what these were
    and how best to influence them. What health consisted of in the first
    place and what was desirable about the achievement of that state were
    to an important extent simply treated as "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 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 a
    value-neutral ideal, and our diagnoses of disease, infirmity and
    illness have always been freighted with cultural and moral
    significance. But the scope and force of medical intervention is
    deranging our sense of the standards against which we would 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 and 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. Meanwhile, our hopes and desires and sometimes our
    demands 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

    What is a life?

    In a [10]recent editorial inspired by the Schiavo case, David Brooks
    claimed 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, the dismissive or oblivious attitude we have come
    to expect public conservative figures to take whenever they encounter
    values with which they disagree. Remember, for example, the discussion
    just a few months back of the 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 homophobia to vote
    palpably against their own stated interests.

    But Brooks' discussion of the differences in the ways in which many
    conservatives and progressives talk about the dilemmas of a case such
    as Schiavo's does highlight important moral, cultural, temperamental
    distinctions that likewise illuminate the emerging terrain of
    [11]bioconservative and technoprogressive positions 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."
    And 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."

    In this formulation, Brooks manages rather incredibly to paint
    progressives simultaneously as bureaucratic bean-counters altogether
    dead to the luminous ethical distinctions that drive the more epic
    moralism of their righteous conservative counterparts, while at the
    same time accusing them of flinging moralizing assessments about just
    whose lives get to count as lives "fully lived" as opposed to "mere
    existence" in a rampage of apparently arbitrary judgment.

    Of course, hiding behind the anemic notion of "quality of life" in
    Brooks' accounting here is in fact a progressive moral value quite as
    luminous as anything he would attribute to conservative moralists, a
    value widely and passionately affirmed and on which the recent track
    record of conservatives is troubling indeed, whatever their occasional
    lip-service to the contrary: Consent.

    Denying 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

    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 civilization these

    And it follows as night does 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 in fact safe to say with Brooks that 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 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, then to claim that their
    voice stands for countless voiceless voices as well as their own?

    Conservatives pretend to extend the dignity and status of citizens to
    nonpersons, and in so doing inevitably evacuate actual citizenship of
    that status. In ascribing "dignity" so uncritically it is the social
    conservatives who stretch morality as thin as the skin of a soap

    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.

    From disability to diversity

    Technoprogressives maintain that technological development is becoming
    not just a disruptive but a genuinely revolutionary force.
    Technological change undercuts the normative weight of claims made in
    the name of the "natural" in ways that, conjoined to deepening
    democracy, 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

    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

    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 technoprogressives 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 [12]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 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 is
    circulating here in ways that would have to 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 fraught heartbreaking battles to
    champion the rights and standing of such 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 precisely never 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

    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 our own personal
    paths of self-determination on the basis of reasons at least
    intelligible enough to satisfy the conditions of informed and
    competent 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

    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.


    3. http://www.betterhumans.com/News/news.aspx?articleID=2005-04-01-3
    4. http://www.betterhumans.com/News/news.aspx?articleID=2005-04-01-2
    5. http://www.betterhumans.com/News/news.aspx?articleID=2005-03-31-2
    6. http://www.betterhumans.com/News/index.aspx
    7. http://www.betterhumans.com/About_Us/Products/Syndication/index.aspx
    8. http://en.wikipedia.org/wiki/Terri_Schiavo
    9. http://www.floridatoday.com/apps/pbcs.dll/article?AID=/20050318/NEWS01/503180350/1006
   10. http://www.nytimes.com/2005/03/26/opinion/26brooks.html?
   11. http://www.betterhumans.com/Features/Columns/Progressive_Futures/column.aspx?articleID=2004-12-22-1
   12. http://www.alternet.org/story/21624/

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