All posts by Samee F Sulaiman

The Terri Schiavo Case: Desires, Interests, and Bioethics at the Threshold of Life

(Also please note there are two blog posts today, because we had to double up, so see the one below this post)

In her seminal text, ”Can the Subaltern Speak?,” Gayatri Spivak articulates the complex relationships between intellectual representations and the subjects of those intellectual representations. At the risk of oversimplifying an incredibly complex text, one of her main arguments is a delineation between the interest and desire of the subject. What is relevant from this text in relation to the question of bioethics is this difference between interest and desire and what she argues is the responsibility of the intellectual to not turn away from the complex ethical and political implications that come with the intellectual representation of people who desire against their own interests. The subaltern (by definition) cannot speak so the intellectual cannot shy away from the two forms of representation, which are political representation (the interests of the subject), and representation as in re-presenting (as in vocalizing the desires of the subject). To me, this tension between interest and desire underlies all the difficult issues the readings for this week try to address, and consequently, the authors have to work within the tension of representing their subjects and re-presenting them

Applying this to the readings for this week on bioethics, I could not help but think about the ways medicalized subjects and research subjects are effectively made subaltern (by systems of care and research, not by the authors necessarily.) In the pieces we read by Professor Mason, and Adriana Petryna we see the ways in which people become populations undergirding data and in effect anonymized to the point of amorphousness. In the piece by Kaufman (optional reading), we see how the logic of our systems of care ”to move people along” can make individuals subaltern at the end of their lives. For example, people are resuscitated by CPR back into a “threshold of aliveness”(118). There is also Mrs. Krieger who says flat out “I don’t want to live” and that she would prefer to die at home, but is effectively ignored and put into a hospice anyway.

In both and many of the other cases, perceived interests and desires come into conflict with each other. The desires of research participants in the Professor Mason’s piece and Petryna’s piece are effectively ignored and that is justified by certain kinds of public interests. When it comes to Mrs. Krieger her desire to die at home without the stress and anxiety of the various kinds of care keeping her alive, both her daughter and her doctor seem to effectively override those desires through a logic that posits her staying alive as being in her interests.

Arthur Kleinman’s piece on bioethics seems to argue for an open engagement with this tension between desires and interest, and for attending to the process of framing the ethical problems itself. In doing so he argues for a deliberative relativism. The limits of such an argument is that sometimes issues that seem to fit into bioethical frameworks take on political proportions much larger than the issues a bioethicist would normally address such as the case of Terri Schiavo.

I remember the non-stop coverage of this case on television when I was younger. The fundamental tension was between the husband of Terri Schiavo, a woman who was in a vegetative state for ten years, and her family. The fight to take her off the ventilator or leave her on it eventually went to the Supreme Court, Congress, and even involved President George Bush.

“He believed she would never emerge from her comatose state — as did every doctor who examined her.”

“Terri’s family bitterly disagreed. They still believe to this day that she would have wanted to live, that her husband did not have her interests at heart and that they were unfairly pushed aside in their effort to save her life.”

Both sides of this dramatic political conflict believed they had the best interests of Terri Schiavo at heart or claim they knew what she would have wanted. Terri Schiavo, however, was made subaltern by her medical condition (I mean this as a provocative analytical suggestion, but I do not mean it as a political claim). She could not speak any desires. This might seem like an odd statement considering that she was in a vegetative state, but as Kaufman might say she was still in the “threshold of aliveness” even if she was not alive in the sense of “a state of identifiable awareness or even the most minimally discernible functional or expressive ability.”

I think this is what makes bioethics so difficult. Medical science has taken us so far that we are constantly pushing the “threshold of aliveness” and can gaze further into the earliest and latest stages of life (and aliveness) than ever before. At these bio-temporal extremes, the tension between desire and interests becomes much more stark as desire becomes less and less legible, and as interests lie more and more in the hands of the people and systems around a subject.

I have a lot more that I could write or say but I would rather put some if it in some of following questions in hopes of fostering discussion.

Can we think of bioethics as the opposite of “moving things along,” that is stopping the moving in order to reflect and assess?

Does Arthur Kleinman’s prescription for bioethics leave enough room for reflection on events that become as political as Terri Schiavo’s case?
How does disability at large and more specifically the example of anticipating a child with down syndrome complicate (or not complicate) the issues at hand. What happens Kleinman’s framework when the people most affected by bioethical decisions cannot participate in the negotiation he proposes?

(Edit: missing word in sentence inserted)