narrative medicine

Godwin’s Law

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Image by life serial via Flickr

I went to a talk yesterday that was supposed to be a disability-studies-oriented analysis of Kazuo Ishiguro’s  Never Let Me Go, a fantastic(al) novel of organ “donation”.

I read the novel back in October and as with all of Ishiguro’s work, fell instantly in love.  But I didn’t read it as a disability narrative at all — to me, it seemed much more closely aligned with the Gothic tradition, from Frankenstein on down.  So I was really intrigued to hear what this novel could tell us about disability, and vice versa.

The talk was held in a tiny little room at the undergraduate campus of my medical school.  Seriously, my bedroom — a New York City bedroom — felt larger.  Luckily I got there early and went and hid in the back with a couple of my classmates, all of whom were like “You didn’t see the disability stuff in the book? Man!” I started to figure I’d really missed the boat on this one.

So after an obnoxiously long introduction (seriously, why do they have to do that? just tell me the person’s name, their academic background, and maybe the title of their most recent book), the speaker got started.  She opened with … you guessed it — physicians as Nazis!

Or maybe you didn’t guess that.

She did talk about interesting concepts, such as the integration imperative (mainstream education, the Americans with Disabilities Act)  and the elimination imperative (eugenics and prenatal genetic diagnosis (?)).  Like I said, I’m not a disability scholar, so these might be totally obvious concepts, like the mechanics of breathing or the existence of the falx inguinalis.  They were new to me, and therefore cool.

But.

Saying prenatal genetic diagnosis is eugenicist is a bit much.  Her only example was “testing for Down Syndrome.” I’m assuming she meant the quad screen, which is ordered routinely in the second trimester for Down, among other things.  Why do physicians order it?  According to the speaker, so we can carry out our evil Nazi eugenicist plan (yes, she actually said Nazi) and pressure the woman to abort a fetus with Down.

Because, you know, we don’t think the woman and in many cases her partner should be prepared for the birth of a child with Down syndrome — the high likelihood of congenital heart disease necessitating neonatal cardiac surgery, the risk of subluxation of the cervical spine, the increased incidence of Hirschsprung’s disease (paralyzed bowel, requiring invasive procedures to allow defecation).

No, we don’t order tests because we believe parents should be prepared and not subjected to a barrage of issues in a few days.  We order them because we like killing babies — especially disgusting unfit babies!

Look, I know that in the past, eugenics was THE way to be in the US.  That includes my own home state, which forcibly sterilized “imbeciles” (apparently this was a scientific/legal term?) well into the 1930s.  And I know that some couples may choose to abort a child with Down Syndrome.  That isn’t the result of physician pressure, as this speaker implied — that sort of pressure is unethical and probably illegal in many states.  It’s an individual choice, and if you start restricting abortion based on your interpretation of the woman’s reasoning — well, you’ve just lynched patient autonomy.

Oh, my dears, but the talk got worse.  To prove this, let Facts be submitted to a candid world.

  • She hath conflated physical and cognitive disability, as well as congenital and late-life disability.  Because disability studies, a field dedicated to examining the lives of those who were invisible until so recently, evidently likes to clump people into a homogeneous group defined simply as “not healthy.”
  • She hath confused transplant recipients and the disabled in order to stuff Never Let Me Go into her talk.  Many transplant recipients are disabled, or at least have very limited mobility, but that doesn’t mean that they are the same thing.  They’re not the same thing a bit, as the Mad Hatter said.  For one thing, transplant holds the promise of restitution — disability absolutely precludes it.
  • In fact, she hath not talked about the novel AT ALL.  Instead, the talk briefly (ten minutes of a two hour talk) discussed certain scenes from the film adaptation.  I know it’s, like, a really weird concept, but films are not novels.  I haven’t seen this film — I am physically revulsed by Keira Knightley’s cheekbones and poor acting  — but I heard from friends who have read the book and seen the movie that the movie changes a lot (unsurprisingly) and has a completely different theme.

A number of audience members asked for clarification on these and other points, and she blew them off.  “Such interesting thoughts,” without actually responding to anyone.  I hate when they do that.

But besides my annoyance at sitting through a two hour talk that not only failed to deliver but also had an exceptionally poorly constructed argument, there’s a deeper issue here.  One of the main problems I’ve encountered this year has been the intense antagonism on both sides of the literature/medicine divide.  Especially in a program dedicated to bridging that gap — weird, right?  But in every single text we’ve read, doctors are presented as egotistical, monomanical, full of hubris, patient-haters…. The Nazi connection, I admit, is new.  But I often have to listen to classmates’ comments on how awful doctors are, and when I or either of the two attendings in the program try to explain why doctors can seem uncaring, we’re accused of not valuing the patient’s voice.  And then, the Program is utterly bewildered that more doctors/medical students aren’t jumping to sign up.

The talk itself ended with a “rhetorical” question asked in one of the lecturer’s seminar: “What would I do if I had a kid with a disability?”  The scare quotes are because unlike the speaker, I don’t think it’s a rhetorical question at all.  It’s an utterly practical question, one that faces probably hundreds of families a year.  According to the speaker, the first decision — the first thing to be “done” — is to abort or to keep the fetus. Is that eugenics? I don’t know. Maybe. But isn’t it a decentered eugenics, practiced not by the omnipotent physician (ha!) but by individual members of the public?  Perhaps what is needed is not name-calling but a better public understanding of the life of individuals with particular disabilities.

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5 thoughts on “Godwin’s Law

  1. Why do you even bother with these people? If they want to gnash their teeth and bemoan the state of the modern physician, well, that is their prerogative. If they are really serious they can go to medical school and show us dummies how to do it right. You don’t have an obligation to take part in their little wank session.

    1. I disagree. Medicine — at least the patient care aspect — draws as much on the humanities as on the sciences. Otherwise we’d all be doing bench research and working with mice instead of people. The humanities can offer a number of things, including ethical principles (philosophy), careful attention to detail (literature), and frameworks for thinking about the individual within the group (sociology).

      When done well (and I think this particular speaker did it very poorly indeed), it’s not about prescriptivism and “showing us dummies how to do it right.” It’s about addressing problems from multiple perspectives. Take the bane of every physician’s existence: non-compliance. It was the MO of anthropologists, with their penchant for going into people’s homes, that showed us pills in plastic baggies and suggested those marked weekly pillboxes. It hasn’t completely solved the problem, but it’s helped a great deal.

      Antagonism and name-calling doesn’t move anything forward and just pisses everyone off. That goes equally for calling physicians Nazis and humanities scholars wankers.

  2. I believe that it is commendable that you attended Ishiguro’s talk. As you stated, its important to understand the perspectives of people around you, even if you disagree with their viewpoints. In this regard, a physician’s role in patient care is to educate the patient of the expected diagnosis, the consequences of the condition, and to find them help. That could range from meeting with a social worker to an abortion, and it is the patient’s duty to decide what is the best decision for them. It’s a shame that Ishiguro’s take on this role was boiled down to eugenics, an obvious misleading and biased viewpoint on this process.

    You briefly mentioned there were two different imperatives, as physicians to be, we are taught to uphold the integration imperative. Was there any information given on if or how often a physician will break the mold and go to the elimination imperative and flat out recommend termination of the pregnancy?

    1. Just to be clear, it wasn’t a talk given by Kazuo Ishiguro (I’d have swooned over that!), but by a visiting disability scholar from Emory.

      The speaker categorized all physicians as fitting in the elimination imperative, actually. That’s what I objected to. She didn’t really speak any further about the role of the physician, but during my OB rotation, my patient was visited by a large team (geneticists, neonatologists, high-risk obstetricians) who recommended she terminate based on prenatal testing indicating anencephaly. She refused, and the issue was dropped; she remained on the floor, and we continued to care for her. I didn’t find out about this meeting until afterwards, unfortunately (all this was from the notes in the chart), and as I only saw her for a few moments at 5 AM every day, I figured that was an inappropriate time to ask how she felt about the situation.

      If anyone else has had experience with this integration/elimination business, the ethicist buried in me would love to hear about it.

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