Of flesh and blood I’m made

16 01 2014

What is human?

I got into it with commenter The Wet One at TNC’s joint, who chided me not to, in effect, complicate straightforward matters. I responded that straightforward matters often are quite complicated.

In any case, he issued a specific challenge to claims I made regarding the variability of the human across time and space. This request was in response to this statement:

At one level, there is the matter of what counts as “reasonably concrete realities”; I think this varies across time and place.

Related to this is my disagreement with the contention that those outside of the norm have fallen “within the realm of the ‘human’ for all intents and purposes’. They most assuredly have not and to the extent they do today is due to explicit efforts to change our understanding of the human.

Examples, he asked?

As one of the mods was getting ready to close the thread, I could only offer up the easiest one: questions over the status of embryos and fetuses.

Still, while I think that a reasonable response, it is also incomplete, insofar as it doesn’t get at what and who I was thinking of in writing that comment: people with disabilities.

“People with disabilities”: even that phrase isn’t enough, because “disability” itself isn’t necessarily the apt word.  I had referred in an earlier comment to those whose morphology varied from the statistical norm; not all variations are disabilities in even the strictest sense.

In any case, when I went to my bookshelf to try to pull out specific, referenced, examples, I was stopped by that basic question which set off the whole debate: what is human?

Now, in asking that here I mean: how maximal an understanding of the human? Is to be human to be accorded a certain status and protection (“human rights”)? or is it more minimal, in the sense that one sees the other as kin of some sort, tho’ not necessarily of an equal sort?

Arendt argued for a minimalist sense when she noted there was nothing sacred in the “naked” [of the protections of the law] human, meaning that such status granted no particular privilege. That I both do and do not agree with this is the source of my estoppel.

Kuper in Genocide notes that dehumanization often precedes assault—which suggests that before the one goes after the other, that a kinship is recognized which must then be erased. But maybe not. I don’t know.

Is the human in the recognition? If you are akin to us (and we know that we are human), then we will grant such status (for whatever it’s worth) to you. We might still make distinctions amongst us as to who is superior/inferior, but still grant than an inferior human is still human. There’s something to that—something which I perhaps should have emphasized a bit more than I did in my initial go-’round with TWO.

But I also think are cases in which the kinship might repulse rather than draw in: that disgust or horror (or some kind of uncanny valley) gets in the way of seeing the disgusting/horrid/uncanny one as human. I’m thinking of the work of William Ian Miller and Martha Nussbaum, on disgust, and, perhaps, to various histories of medicine,especially regarding the mentally ill. Perhaps I should dig out that old paper on lobotomy. . . .

Oh, and yet another wrinkle: Insofar as I consider the meaning of the human to vary, I don’t know that one can elide differences between the words used to refer to said humans. “Savage” means one thing, “human” another, and the relationship between the two, well, contestable.

I’m rambling, and still without specific, referenced examples for TWO. I can go the easy route, show the 19th century charts comparing Africans to the great apes, the discussion of so-called “primitive peoples” (with the unveiled implication that such peoples weren’t, perhaps, human people). Could I mention that “orangutan” means “person of the forest”, or is that too glib? Too glib, I think. Not glib is the recent decision to limit greatly the use of chimpanzees in federally-funded research—the extension of protections to our kin, because a kinship is recognized.

And back around again. I don’t know that one can meaningfully separated the identity of  a being from the treatment of the identified being; identification and treatment somersault over and over one another.

So if one protections are offered to one member of H. sapiens and it is withdrawn from another, then it seems to say something about the status of that other: that we don’t recognize you as being one of us. We don’t recognize you as human.

If things can be done to someone with schizophrenia (old term: dementia praecox) or psychosis—various sorts of water or electric shocks, say—that would not be done to someone without these afflictions, then one might wonder whether the schizophrenic or psychotic is, in fact, recognized as human, that as long as the affliction is seen to define the being, then that being is not-quite-human.

Ah, so yet another turn. I allowed for the possibility of superior/inferior humans [which might render moot my examples from eugenics and racism]; what of lesser or more human? Is someone who is less human still human? What does that even mean?

Back to biology. Those born with what we now recognize as chromosomal abnormalities have not and are not always taken in, recognized as being “one of us”. A child with cri-du-chat syndrome does not act like a child without; what are the chances such children have always been recognized as human?

Oh, and I’m not even getting into religion and folklore and demons and fairies and whatnot. Is this not already too long?

I can’t re-read this for sense; no, this has all already flown apart.





Can you hear me

7 05 2013

I blew my students’ minds today.

No, not anything brilliant on my part: I brought up an issue in my bioethics course that I’ve mentioned in previous courses—had thought I’d mentioned previously in this course—and a number of them lost it.

I told them that there were deaf people who didn’t think there was anything wrong with being deaf, and furthermore, they’d like you to keep your cochlear implants and whatnot to yourselves, thankyouverymuch.

That did not compute.

Now, the backdrop for this moment of brain splatter was a discussion of social coercion, normalization, enhancement, disability, and morality (among other things). Somewhere in this discussion I noted that devices which are promoted as aiding the disabled might be more about assuaging the discomforts of the non-disabled. This was one of Anita Silver’s points in her essay “A Fatal Attraction to Normalizing” (in Enhancing Human Traits, ed. by Erik Parens), as exemplified by the decision of the Canadian government to push children affected by thalidomide into prostheses and forbidding them to roll or crawl. “The direction of resources to fund artificial limb design and manufacture rather than wheelchair design was influenced by the supposition that walking makes people more socially acceptable than wheeling does.”

A number of them did not like where I was going with this. So how far do we go to accommodate those people, they said. If we’re the majority, shouldn’t they, you know, have to adapt? Are we just supposed to design everything around them?

One of them even complained about ramps: Why should I have to go around and around if I just want to take the stairs?

I pointed out that ramps rarely replace stairs, but are instead treated as an addition, meaning that the stairs remained. I also noted that crappy design is bad for everyone. The building in which the class is held, Carman Hall, is a terribly designed building—you have to go down a flight of steps just to enter the building—and suggested that it’s just possible that being forced to think about accessibility for, say, wheelchair users might just lead to designs which are good for everyone. Curb cuts, I noted, are useful for those pushing strollers or, say, 3 weeks worth of laundry in a cart.

Besides, I noted, at some point we’re all, if we’re lucky, going to get old and frail, so designing for access is, in effect, designing for everyone.

In any case, my mind was a little blown by their sense that accommodating people who came in a model unlike themselves was unfair.

Okay, now back to their shorted neural circuits. Deafness, I noted, is a condition, and some who are deaf are also a part of the Deaf community. These Deaf members see themselves as distinct, not disabled, and their community as worth preserving; as such, they see cochlear implants as a way of eliminating members of that community. Furthermore, since cochlear implants are imperfect, not only will these deaf people not gain the full range of sound as hearing people, they will never gain full status as hearing people: they will also be lesser “normals” than full and “normally” Deaf.

But why would they want to be deaf? they asked. Doesn’t that limit them? Why wouldn’t they want cochlear implants?

Well, I noted, we’re all hearing in our class, so if we lost our hearing we would, in fact, experience it as a loss. But while we might be able to see only the limitations of deafness, they see other capacities enabled by it.

They were dubious. What about contacts, one of the students asked. I’d be blind without my contacts. J., I said, you would not be blind, you would simply have bad sight, which is more akin to being hard of hearing than being deaf.

(That said, it was a provocative question: is their a Blind community akin to the Deaf community? And what would be the implications of that? What are the implications of a lack of a Blind community?)

I’m used to students gasping a bit at the thought that Deaf people might not have a problem with their own deafness, but I can usually get them to consider that the problem with deafness is the problem that hearing people have with deafness. No, I’m trying to force them to accept the Deaf argument—I’m not quite sure what to make of it myself—but I do want to crowbar them out of their own defaults, their own unthinking attachments to normal.

There are streams within bioethics which maintain their own unthinking attachments to normal, as well as those who prefer to poke a stick into the concept. I’m more in the latter camp (big surprise), but as I think normalizing is impossible to avoid, my approach is simply to unsettle, and be unsettled by, the normal, and go from there.

The students weren’t so much unsettled as shocked, and given that shocking can lead to reaction rather than reflection, I guess I shouldn’t be shocked that they held ever tighter to their own normality.





Testing, one, two

20 02 2012

Rick Santorum got one (kinda) right.

The bottom line is that a lot of prenatal tests are done to identify deformities in utero, and the customary procedure is to encourage abortions.

That is exactly why a lot of prenatal tests are done—to identify any possible problems—and, yes, if the problems are sufficiently grave, an abortion may follow.

I’d argue about the word “encourage”—doctors are unlikely to be so explicitly directive in their discussion of test results—but I wouldn’t doubt that a fair amount of pressure is brought to bear on the woman (and her partner) to decide quickly, not least because abortions become more complicated the later in the pregnancy they’re performed.

And in fact, prenatal testing, particularly amniocentesis — I’m not talking about general prenatal care—we’re talking about specifically prenatal testing, and specifically amniocentesis, which is a procedure that actually creates a risk of having a miscarriage when you have it, and is done for the purposes of identifying maladies in the womb. And which in many cases — in fact, most cases physicians recommend — particularly if there’s a problem — recommend abortion.

Again, this is less clear. “Non-directive counseling” is the watchword in genetics counseling, and while OB/GYN’s have not necessarily undergone such training, the mantra of let-the-patient-decide has pretty well seeped into the ethos of American medicine.

“Doctor’s orders” ain’t what they used to be: since the 1970s, patient autonomy has been elevated to one of the main principles of biomedical ethics, a principle reinforced by the legal system. Doctors may and do recommend a particular course of action, but having been imbued with the notion of respecting the ability of the patient to make her own decisions and mindful of the possibility of tort action if their recommended solution goes south, they are far more likely to dump information into the patient’s lap and say “your decision”.

Okay, that’s a bit severe, but it is the case that patients expect more information and that courts will hold a doctor liable if she withholds such information from them; failure to perform standard medical tests and inform the patient of the results can itself result in lawsuits.

This is the real dynamic behind the pressure—and oh, yes, there is pressure*—for pregnant women to undergo prenatal testing.  Blood tests and ultrasounds are routine in all pregnancies in the US, and amniocentesis is strongly recommended for high-risk pregnancies, a procedure which Santorum, correctly, notes puts the fetus at risk for miscarriage. To decline such tests is to open oneself to repeated (incredulous and/or hostile) questioning of that decision.

But here is where Santorum begins to go off track:

One of the things that you don’t know about ObamaCare in one of the mandates is they require free prenatal testing. Why? Because free prenatal testing ends up in more abortions and, therefore, less care that has to be done, because we cull the ranks of the disabled in our society. That too is part of ObamaCare — another hidden message as to what president Obama thinks of those who are less able than the elites who want to govern our country.

Let’s unpack this, shall we?

First, those who perform the test, those on whom the tests are performed, those who pay for the test,  and those who regulate insurance are not all the same person. The doctor orders the test because it is standard medical practice and because she agrees that this standard medical practice is, in fact good, insofar as it gives both her and her patient more information. The patient generally (although not always) wants this information, so she, too assents to the screenings.

Those who pay for the test do so as a result of pressure from doctors to pay for good medical care and because, yes, testing can lead to lower costs to the insurer down the road. These lower costs may result from treatments prior to birth to forestall greater problems after birth and, yes, from women deciding to terminate pregnancies which are at high risk of resulting in the birth of a child with a disability. Over 90 percent of fetuses which test positive for Trisomy 21, the chromosomal abnormality responsible for Down Syndrome, are terminated.

There was, in fact, a case in which an insurer told a couple that if they did not terminate an affected pregnancy, any medical expenses associated with the birth and the child would not be covered. The couple sued, and won. Given that many couples will chose voluntarily to end such pregnancies, however, such coercion is generally unnecessary.

Finally, there are the insurance regulators, who have to balance concerns of patients, doctors,  and insurance companies; given that there is little conflict between these different groups (although there may be with some individual patients and doctors) about the desirability of the tests themselves, encouraging or even mandating partial or full coverage of such tests is non-controversial.

This basic dynamic was set into play long before Barack Obama became president, and it is highly unlikely that the (equally highly unlikely) presidency of Rick Santorum would alter this in any way.

Oh, he might try to force insurers to drop coverage of prenatal care, but both Congress and the courts would be hostile (for a variety of reasons) to any such executive orders. The testing regime, for better and for worse, has become entrenched in American medicine.

Let us now consider the most offensive aspect of Santorum’s screed against screening: he doesn’t consider the role of the women (or couples) themselves. Once again, they are pure victims of a dark techno-liberal conspiracy, unable to make any decisions for themselves and unworthy of consideration as actors in their own lives. They must be protected from Obama, liberals, doctors, and, of course, themselves.

That is Santorum’s own not-so-hidden message to the rest of us: he doesn’t consider us able to make the most basic decisions about our own lives.

I hate the term “sheeple”, but it certainly seems as if that’s how Santorum, the would-be shepherd, views the American people.

~~~~~

*Questions regarding prenatal screening have long preoccupied those who work in bioethics; a good introduction to some of this work is Prenatal Testing and Disability Rights by Erik Parens and Adrienne Asch.