Anorexia and Autonomy

Rudolph Bell's book Holy Anorexia is an important example of the fruitfulness of cross-disciplinary study in religion.

His study probes the theological, historical, and psychological meaning of extreme fasting behaviors in medieval women whose asceticism was usually seen as evidence of holiness. Avoiding the facile ascription of mental illness to these women ("Oh, they must've been, like, anorexic or something!"), he nonetheless takes his cue from current psychiatric evaluations and treatments of (modern) anorexia nervosa.

Anorectic behavior comes about in response to an intricate yet convoluted web of signals a modern girl (anorexia generally arises in females and during adolescence) receives in regard to her appearance. Thinness (and physical beauty more broadly) is one of a few traits consistently approved and rewarded in young females, yet the steps that a girl might take to achieve those rewards may prompt correction, disapproval, or intervention from parents or such other authorities as educators or medical caregivers. The twin incentives of societal approval and parental opposition feed the anorexic girl’s choice to control her own body through self-starvation—all the more so as her successes in weight loss and self-assertion mount.

Analogously, a medieval woman had fewer avenues of expressing or embodying holiness than were available to men, and the ascetic practices which might identify a woman as holy could just as easily have been viewed as evidence of heresy or demon possession as of beatitude. The “holy anorexic” is confirmed in her path of self-starvation both by the ascription of holiness conferred on account of her suffering and by the suspicion aroused by her extreme practices of asceticism, especially where that suspicion is allayed or countered through divine intervention.

The struggle for autonomy looms large in Bell’s renarration of these saints’ vitae. While his efforts to offer a psychoanalytic reading of these women are unimpressive—particularly in the absence of any serious or consistent engagement with the problem of collaborative authorship present in virtually all of these texts—his identification of the persistence of themes of self-assertion in the face of parental, religious, or social conflict is helpful.

When one is obliged to suffer the removal of one’s autonomy—whether in the form of a forced marriage, opposition to taking religious orders, or physical or sexual abuse—choosing another form of suffering—starvation, disfigurement, isolation—functions as a reassertion of one’s autonomy. The relationship between suffering and consent is inverted, transforming utterly the meaning and experience of them both. In the first case, the injury is all but identical with the removal of choice; in the second, the retrieval of autonomy is identical with the (chosen) injury. That the chosen suffering is further rewarded by its association with otherworldliness, whether of the divine or demonic sort, only amplifies the sense of transformation.

Despite his misstep in attempting to psychoanalyze historical figures with fragmentary, consciously scripted, and/or heavily edited literary works as his only evidence, Bell's work is enormously important for his having probed this intersection of autonomy and suffering. Many modern discussions of suffering (and its relief) are dependent on inchoate assumptions about exactly this relationship, and any work that prompts a more intentional examination of the topic is worth a read.

A Good Death?

"Heart attacks are the number one killer of middle aged men!"
"20,000 people per year die needlessly because of the lack of effective treatment for this disease."
"20% of eighty-year-olds who will die this year will die of complications from Alzheimer's."
"Pancreatic cancer accounts for only 1% of the annual cancer diagnosis rate, yet 15% of the annual cancer death rate."

Fundraising for scientific charities or research, advocacy for federal funding, and bioethical arguments concerning medical technologies or public policy goals will often quote statistics concerning the death rate for a particular condition or set of circumstances.

(I just made all those statistics up, by the way. This is not the blog to read for accurate scientific data.)

These statistics are deployed in order to convince the listener/reader of the urgency of the need for donations, funding, excellent students to enter the field, policy changes, or whatever is being sought. "20,000 people per year? Oh, that's terrible." "What? The number one cause of death? That's where our research dollars need to go!!" "Such a high proportion of deaths? We must do something about that."

Because the answer to the implied question--"How many people per year should die of this or that condition?"--must, of course, be, "None, if we could prevent it!"

30,000 children under the age of 5 die every day from starvation-related causes. (That's one statistic I didn't make up, actually.) How many children should die every day from starvation-related causes? If your answer is not a resounding "NONE!" you are an inhuman monster.

How many people per year should die of pancreatic cancer? None, if we can prevent it.
How many people per year should die of AIDS-related illnesses? None, if we can prevent it.
How many people per year should die of MRSA? of heart disease? of leukemia? of renal failure?

None. Of course.

But the argument takes a different turn when you begin to ask a different question. Of what should people die?

What should be the number one killer?

In some cultures and in some times, the answer to this question was more clear. People should die in battle, if they could arrange it. Or they should die while on the hunt, or with their families, or in service to the gods. When one acknowledges that one must die, it is not too difficult to imagine better and worse ways to die.

Francis Bacon changed the course of history when he challenged the world to "call no disease incurable." Medical sciences--indeed, all the sciences--were given free reign. Any stricture, any obstruction, any challenge to biotechnological progress began to be considered an unfair or irrational or superstitious refusal to save people that could be saved.

After Bacon, the answer (largely implicit) to the question (largely unasked) "What should be the number one killer?" is a resounding, "Nothing." There are only bad and worse ways to die.

For the braver among us, those willing to conjecture about our own deaths, the answer might be "Old age." When pressed, most of us would like to die peacefully in our beds, having been cogent and independent up until the very end, with a minimum (if not a complete absence) of any kind of suffering or disability.

In its more temperate moments, that is the (more likely to be stated) goal of medicine, as well.

But as Joel Shuman notes in the essay "The Last Gift," the WHO and the Department of Health and Human Services do not recognize "old age" as a cause of death. Something specific must be named.

Thus every recorded death in the United States must have a medical condition, problem, or failure as its cause. And when every death is a medical failure, there is no death that might not be prevented or forestalled with technological improvement. Heart failure is a condition, a problem--not a natural terminus. Liver failure is not what happens when one's body has reached its natural capacity to filter its blood--it is the result of specific medical processes, any of which might be susceptible to our control.

There is, then, no natural limit to the reach of medicine. There is nothing that might not be prevented with a little more research, and thus there is nothing that should not be prevented. Any impediment to progress is morally equivalent to a death sentence for those suffering from whatever ailment may be helped by a proposed course of action.

It is appalling that 30,000 children per day die of starvation related causes. It should prompt urgent and concerted effort on behalf of the world's governments and NGOs against immediate and emergent causes (drought, crop failure, natural disaster, war), as well as against more subtle and possibly intractable causes (tyranny, poverty, greed).

But it is appalling not because all deaths are appalling. It is appalling because this earth provides more than enough food for us all, and because technology permits us to transfer the fruits of this abundant patch of earth to that distressed patch of earth, and because international diplomacy gives us the chance to convince even the worst tyrants to allow emergency aid to the starving. These deaths are appalling. These deaths are a result of human sin, or at the very least, of human inertia.

But is it possible to conceive of medical causes for death that are not appalling? not urgent? not inhumane?

There will always be a "top ten list" of causes of death. There will always be a top ten list of causes of death. Is it possible to conceive of a list that will not be a list of looming enemies?

If it is not possible, if there is no death from which we do not look to medicine to save us, we are in grave danger, though we do not know it.

Medicine becomes, in such a case, our god, and there is no end to the sacrifices it may demand of us.

Science Reporting

I've been interested by a slight change that's been happening recently in science and medicine reporting. I've only noticed it in online AP articles, but perhaps those of you who watch TV or read other news sources can tell me how widespread the phenomenon is.

An example is this article. Like most science reporting I've seen, it mentions the results of the study, where the study was published, and a one-sentence "take-away" message from an "expert" in the field.

Unlike most science reporting I've seen, it mentions the methodology of the study and its source of funding.

I think this is an important step nearer to the sort of transparency that should characterize the communication of science to non-specialists. I have noticed several popular health trends for which the warrant was a single, poorly-designed study (or rather, ones for which the study was not designed in a manner which suggested an appropriate or effective course of action), inadequately or inaccurately reported by popular news sources.

Having the methodology and the potential for bias spelled out so clearly as in this article is a real service to the health consumer, as well as the merely-interested-in-medical-science non-scientist.

I've also noticed that the AP is being more transparent about the relationship between their "expert" sources and those who might have an interest in how a study is reported. Such an example does not appear in the article I linked above, but I've noticed many "expert opinions" tagged with such phrases as "suggests so-and-so, who was not involved in the study" or "commented so-and-so, who had not yet read the report in its entirety."

Again, this seems like a promising and appropriate move toward more transparency. Good thing, that.