[Paleopsych] CHE: Life, Death, and Biocultural Literacy

[Premise Checker]

Life, Death, and Biocultural Literacy
The Chronicle of Higher Education, 6.1.6
http://chronicle.com/weekly/v52/i18/18b00901.htm

[Read this one carefully. I often tend to corner solutions rather than 
compromises myself, though. I'd rather that public monies be spent on 
people who do not generate positive externalities. In other cases, I'd 
make a legal presumption toward death: unless someone has expressly 
declared that he wants his body to be kept alive as long as possible AND 
has forked over the money to provide for it, the law should presume that 
those in terminal pain and those who have gone senile do not want such 
support.

[I would not pull the plug on my own mother, any more than Peter Singer 
did on his. I am not an early adaptor of an irreverence toward mere life 
that I'd like to see adopted, which it will be as the Baby Boomers do not 
go to the polls like the G.I. and self-styled "greatest" generation did, 
and won't therefore be so nearly successful rent-seekers. And the upcoming 
labor force to provide these rents will be far less capable, due to 
demographic shifts. The way out is to change ethical attitudes toward the 
prolongation of life.

[By the way, health care is NOT getting more expensive. It is in fact 
getting much cheaper. Health care spending is, of course, going up, but 
this spending purchases the latest and highest-tech care and is largely 
demand driven. A 1985 level of health care is cheaper now than it was 
1985. I wish I had some actual figures here. I also wish I could establish 
my estimate that life expectancy under 1985 levels of spending would mean 
one year less of life expectancy. Life expectancy went up five years in 
the last twenty years (a trend going back over a hundred years). My guess 
is that a fifth of it is due to spending.

[Read the article carefully, to learn about the inconsistencies in various 
"conservative" and "liberal" positions. Then wait for the next article, 
which will throw cold water on whole thing. Pause first, though, to try to 
Check its major Premise.]

    By LENNARD J. DAVIS

    It is a literary convention that at the moment of death, one may
    finally come to know oneself. In many of Dickens's novels, for
    example, you'll find a touching deathbed scene. As the dying character
    fades away, he or she utters a few summarizing words -- or, in the
    case of Shakespeare, a great deal of them -- and those around can wipe
    away a tear and find some significance in the person's demise. In
    literature, one's identity, paradoxically, often comes to fruition at
    the moment of death.

    But while Dickens had metaphorical harps 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.
    Our sense of identity is much less clear than it was for people in the
    past. For Dickens and his compeers, the division between life and
    death was fairly knowable. But now, at every step through our life and
    death, we have to take into account technological innovations that
    newly define what it means to be human.

    As a result of the publicity surrounding the Terri Schiavo case -- a
    legal brawl between her husband and other family members about whether
    her feeding tube should be removed after she had been in what some
    doctors had diagnosed as a "persistent vegetative state" for 15
    yearsmany of us are writing living wills. In so doing, we have to
    think about not only what it means to be a human, but also at what
    point people cease to have identities.

    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 ventilator. 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. Some people see being a "vegetable" as an
    insult to existence, while others see it as a variety of life. In
    writing our own living wills, we must attempt to define our identity
    and to project what our identity would and should be if we were
    comatosethat is, permanently unconscious and unresponsive; in a
    persistent vegetative statethat is, awake but unaware; minimally
    conscious; or severely disabled. By doing that, each of us is
    wrestling in our small corner of existence with very large questions
    concerning the point at which identity meets biotechnology.

    The problem is that most of us are ill equipped to make those choices
    because we know so little about the facts of life and death. That is
    probably one reason why at least a third of people who make advance
    directives change their opinions within two years, according to a 2004
    Hastings Center report, "The Failure of the Living Will," by Angela
    Fagerlin, a medical researcher, and Carl E. Schneider, a law
    professor, both at the University of Michigan. Our college educations
    provide us with almost no way to sort through such end-of-life
    decisions. Most of us know very little about biology, don't keep up on
    recent developments in neurology, and barely know the difference
    between a coma and persistent vegetative state. We rely on our
    physicians to tell us about the complexities of medicine, and some of
    us search the Internet to find out what our doctors won't say. In
    short, we have to make up and cobble together what we didn't learn in
    school. There are few if any college-preparatory courses or a single
    discipline that prepares us to grapple with the questions that are
    emerging in the postmillennial public sphere.

    So when it comes to understanding what makes us human, what defines
    consciousness and personhood, when life begins and ends, we often have
    to shoot from the hip. And that can mean we end up shooting ourselves
    in the foot. When we as a culture have to address issues of life and
    death -- such as whether we should allow stem-cell research or
    third-trimester abortions, whether we should cause people like Terri
    Schiavo to die, whether people in Oregon are right to allow
    physician-assisted suicide -- we are often at a loss and inconsistent
    in our positions.

    The public historically has turned to scholars and researchers to
    inform difficult public debates. But it isn't really clear what part
    of the academy should be the go-to profession or department. Certainly
    bioethics seems a logical area of study to resolve contemporary
    questions of life and death, but few undergraduates are expected to
    take a required course on those issues, and the field of bioethics
    itself tends to be fairly specific, dealing mostly with medicine, too
    often without connecting the ethical issues to a broader vision that
    includes history and culture.

    Philosophy and political theory are rich areas of study for dealing
    with life-and-death issues, and the writings of John Rawls, Richard
    Rorty, and John Stuart Mill can help us understand citizens' rights
    and liberal thought. But we then would have to graft those discussions
    onto situations that require some medical and scientific knowledge.
    While a few university programs engage in that kind of synthesis, most
    of us are doing this work on our own, without a substantial commitment
    from academe to help us out.

    Disability studies is one field thatis beginning to pull together
    several disciplines to address the philosophical, moral, legal,
    medical, and cultural questions emerging from the intersection of
    biotechnology and identity. Students of disability studies will be
    prepared to discuss medical interventions, the use of technology in
    medicine, the way in which society thinks about the body, and so on.
    But the problem is that most citizens, because they don't think of
    themselves as disabled, will not turn to disability experts to help
    them understand the complex issues highlighted by the Schiavo muddle.

    Therefore, that case, which dealt with a severely disabled woman, came
    down in the popular press to a debate between members of the religious
    right and the liberal left. But neither side was particularly
    knowledgeable about the nature of a persistent vegetative state and
    whether a feeding tube should be considered a medical intervention (in
    which case, by a Supreme Court ruling, it could be removed) or simply
    a form of providing nutrition (in which case it couldn't). Most of the
    people I talked with thought Schiavo was "brain dead" -- an inaccurate
    term, since her brain was working well enough to keep her alive.
    Bioethicists were used freely by both sides, but, aside from the
    openly religious ethicists, the majority followed the bioethics party
    line that has fostered and encouraged a rather strict notion of
    autonomy based on the patient's informed consent.

    When bioethics began as an academic profession, its goal was to
    promote a notion of patient autonomy as opposed to the previously
    unchallenged authority of the medical profession. Therefore most of
    the bioethicists consulted in the case were in favor of removing
    Schiavo's feeding tube, since, they maintained, that was the course of
    action she had wanted, according to her legal guardian.

    Bioethicists fear that interventions by religious groups or the
    government will muck up the principle of patient autonomy. But
    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." That is, if you thought of Schiavo as a "vegetable,"
    your notion of her autonomy would have pointed to removal of the
    feeding tube. But if you thought of her as a severely disabled woman,
    the notion of autonomy would have become more ambiguous. That is the
    position that most people in disability studies took, and so they
    supported leaving the feeding tube in place.

    The brouhaha raised the question of how we understand identity in an
    age that is increasingly "biocultural," to use a term emerging
    recently. A biocultural approach combines the disciplines of science,
    technology, medicine, and the humanities. This nascent discipline --
    which I have been calling "biocultures" -- is often practiced by
    graduate students or professors in departments of history, gender and
    women's studies, criminal justice, medical education, history, science
    studies, anthropology, literature, and cultural studies. Programs such
    as those at the University of California at Berkeley, Duke, Harvard,
    the University of Illinois at Chicago, the University of Michigan, and
    Pennsylvania State University bring together issues concerning the
    body, identity, history, and culture. The trend is important because
    it is crucial not just for scholars in the humanities to know the
    impact that science has on culture and the body, but also for
    scientists, limited by funds earmarked for increasingly narrow
    research topics, to think more broadly about the political, cultural,
    and social implications of what they do.

    Take the prickly subject of abortion. Most people have strong feelings
    about it, but few have the biocultural literacy necessary to
    understand the complexity of the factors involved. And those with the
    technical knowledge often lack understanding of the cultural and
    historical contexts in which abortion needs to be considered. A
    biocultural approach to questions surrounding abortion would encompass
    the latest scientific facts about reproduction, conception,
    implantation, pregnancy, and so on. But it would also consider the
    cultural, moral, and religious contexts that surround the medical
    issues. Further, a biocultural approach would take into account the
    social and political history of the debates themselves, as well as
    related ethical and philosophical issues, such as infanticide,
    prenatal testing, developing-world uses of abortion, animal rights,
    and the death penalty. In other words, just as you can't fully discuss
    Shakespeare without having a certain level of cultural literacy, you
    can't fully discuss issues like abortion without biocultural literacy.

    A biocultural approach to Terri Schiavo -- and, by extension, the
    10,000 or more people in persistent vegetative states throughout the
    country -- would have included a discussion of whether she, even in
    her attenuated state, had an identity. Was she a human being? A
    disabled woman? A homo sacer (the philosopher Giorgio Agamben's notion
    of someone who is alive but can be killed without fear of punishment,
    like Holocaust victims or ostracized ancient Greeks)? What exactly is
    the status of people who are connected to life-support machinery,
    newborns with hopeless fatal illnesses, fetuses, fertilized embryos,
    stem cells, patients in the last stages of Alzheimer's disease, and
    those dying of cancer or ALS?

    These are perhaps the most crucial identities of our times -- what the
    science historian and disability-studies scholar Susan Squier calls
    "liminal lives": those that test our ability to define identity and
    life itself. We will be seeing a huge public debate in forthcoming
    months as the Supreme Court considers Gonzales v. Oregon, deciding if
    terminal patients in Oregon can have physicians assist them with
    suicide. Do dying people have an identity that is different from that
    of ordinary citizens who cannot ask physicians for lethal drugs?
    Stem-cell research and cloning will continue to be enormous issues.
    And, of course, abortion remains one of the major splitting points
    between Democrats and Republicans.

    How can colleges, universities, and the disciplines inform the public
    about cutting-edge biocultural issues? How can our students and
    faculty members be educated so that they can think consistently and
    logically about these questions, so that their feelings can be
    supported with facts? The academy needs a major initiative to provide
    education on these issues that communicates the complexities and
    nuances involved. But if we are not careful, confusion rather than
    clarity will result.

    First, it is imperative that we communicate facts rather than
    opinions. When we talk about abortion, for example, we need to know
    when implantation takes place, when the embryo's nervous system
    develops and begins to feel pain, and in what week viability occurs
    (when the fetus can survive outside the womb). When we discuss the
    history of religious attitudes toward abortion, we need to know, for
    example, when the Roman Catholic Church changed its definition of the
    beginning of life from the "quickening" of the fetus to the moment of
    conception.

    Second, we must be consistent about definitions and willing to
    challenge inconsistent positions. For example, the right historically
    has supported individual and state autonomy and therefore has
    generally opposed federal intervention in individual or states'
    rights. But in recent years the right, particularly the religious
    right, has sought federal intervention against individual autonomy in
    issues concerning the right to life and personal choice -- for
    example, abortion and gay marriage. 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. But any logician could inform the debate by pointing
    out the inconsistency between those positions and support for the
    death penalty, war, and even the eating of animals.

    The left favors autonomy in regard to the body, resisting the idea
    that the state should dictate how and what we do with our bodies. So
    it favors abortion, gay marriage, and freedom of sexual choice between
    consenting adults. It hits a wall, though, in the area of liminal
    lives. Here it is quick to say that people in vegetative states don't
    really have identities and therefore are not autonomous. While the
    left's support of removing Schiavo's feeding tube appeared to support
    her autonomy (by assuming that she would not have wanted to be a
    vegetable), it actually was saying that we should assume that people
    who are disabled enough to be unconscious no longer have identities.
    According to that view, those people -- paradoxically -- no longer
    have the ability to have chosen to stay alive. The left's position on
    abortion supports the right of parents to abort fetuses with
    disabilities, while it objects to the abortion of female fetuses in
    other countries. In addition, the left supports late-term abortions --
    although presumably it opposes infanticide -- even though, because of
    biotechnical advances, the line between inside the womb and outside
    the womb has become somewhat arbitrary and largely a matter of
    conjecture. Now that a third-term fetus can easily be removed from the
    womb and survive, its existence inside or outside the womb is mostly
    determined by medical practice or even parental choice.

    Finally, in thinking about these issues, academics must be leery of
    the pull of identity politics, which condition many of our responses
    in the university. Those on the right think they know the answers to
    questions about identity; those on the left think they do as well,
    even if neither position is internally coherent. Another way of saying
    this is that we have to state openly where our theories begin to fall
    down, where we become incoherent, where our personal biases and
    identity politics muddy the waters.

    One example, which no doubt will upset many of my disability-studies
    colleagues, illustrates my point. Disability studies is fundamentally
    based on, among other things, the idea that people with disabilities
    should have autonomy over their own lives. The independent-living
    movement and much disability legislation stress that barriers to
    active participation and self-determination should be removed. Better
    to live at home with personal assistants, to work without
    discrimination, to navigate the streets without barriers, to
    communicate by all means, and to use adapted media and technology to
    function as fully as possible than to be cared for in facilities, be
    confined to a home, and be limited by "ableist" environments without
    ramps or curb cuts, accessible Web sites, or classrooms with real-time
    captioning. Yet disability scholars and activists also believe that
    autonomous identity is tempered by recognition that we are all
    interdependent, that the model of the free and autonomous individual
    is a bit of a myth, and that the demand that we all be "normal" is a
    burdensome and limiting ideal.

    But in the Schiavo case and in the Supreme Court hearing of challenges
    to the Oregon law permitting physician-assisted suicide, many
    disability scholars have found themselves on the same side as the
    right-to-life movement in opposing the removal of Schiavo's feeding
    tube and physician-assisted suicide. It is striking that a movement
    with roots in liberal-to-left feminism, the fight for civil rights,
    and the demand by progressive, disabled Vietnam veterans for proper
    treatment now appears to the public to be aligned with the religious
    right and social conservatives on those issues.

    Those who support physician-assisted suicide argue that individuals
    with all their mental capacities have the right to end their lives
    before they become incapacitated. It is their right as autonomous
    individuals. Many disability advocates, on the other hand, claim that
    all people who are dying are, in fact, disabled, and that their
    identity as disabled individuals trumps their identity as autonomous
    beings. The faulty syllogism goes that dying people are disabled, and
    in an ableist society they naturally will be pressured to kill
    themselves; ergo disabled people are being put to death through
    physician-assisted suicide. Further, dying people (read "newly
    disabled") will ask for physician-assisted suicide specifically
    because they do not wish to be disabled -- to lose their sight,
    hearing, voice, mobility, and so on.

    There are at least two flaws in that argument. First, it is hard to
    shoehorn someone dying of cancer, for example, into the category of
    chronic disability. The aim of making it possible for disabled people
    to live full lives with their impairments and of ensuring a free and
    accessible society has little to do with someone who will be dead in
    six months (the requirement for receiving physician-assisted suicide
    in Oregon). Why should people have to accept disability status when
    they will be dead within a few months? Second, according to statistics
    provided by Oregon, most people seeking physician-assisted suicide are
    end-stage cancer patients who, by and large, are educated, middle
    class, and informed. While it is true that many seek
    physician-assisted suicide because they fear losing their abilities
    and their autonomy, they no doubt have the independent judgment to
    make that decision.

    It seems illogical for some disability advocates to try to prevent
    dying people from choosing a humane way of ending their lives (as
    opposed to shooting themselves or wrapping a plastic bag around their
    heads) because those advocates see suicide as a critique of the
    disability perspective.

    The activist origin of the disability movement laid down certain
    positions -- notably opposition to euthanasia and physician-assisted
    suicide -- that have become the rule and therefore difficult to
    challenge. Indeed, a long history of abuse against people with
    disabilities, culminating in eugenics and discrimination, supports
    those positions. But there are important distinctions between
    physician-assisted suicide and euthanasia: The former allows patients
    to take by themselves a lethal overdose of a drug prescribed by a
    physician for that purpose; the latter requires that someone else, a
    physician, be the murderer. One could logically support suicide as a
    self-determining act while opposing murder. Yet the religious right
    lumps physician-assisted suicide, euthanasia, and abortion together,
    and so do many in the disability community. A more nuanced approach, a
    biocultural one, would make distinctions.

    In the end, we are all poorly served by an academic community that
    does not promote biocultural literacy. 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.

    Lennard J. Davis is a professor of English, disability and human
    development, and medical education, and director of Project
    Biocultures, at the University of Illinois at Chicago. He is the
    author, most recently, of Bending Over Backwards: Disability,
    Dismodernism, and Other Difficult Positions (New York University
    Press, 2002).