I don’t have much interest in or concern for The Da Vinci Code in any of its manifestations, and even less for the predictable special-interest Catholic whining that accompanies almost any artwork touching on their preferred view of the world. However, one complaint about the newly-released film caught my attention. Fans of the book or movie will not be surprised, but I was not previously aware that one of the chief villains in the story is an assassin monk who has albinism. (What? No dwarf?) This makes approximately the gazillionth “deformed” villain in the history of movies, stage, and novels, and the albinos in particular – a polite but feisty bunch – are getting pissed about it.

Critics cite a long list of albinos cast as heavies by Hollywood: The dreadlocked twins in “The Matrix Reloaded,” a powder-haired hit man in the Chevy Chase-Goldie Hawn crime romp “Foul Play,” the pasty zombies in “The Omega Man,” a sadistic killer in “Cold Mountain,” even the wicked executioner in the fairy-tale comedy “The Princess Bride.”

Michael McGowan, an albino who heads the National Organization for Albinism and Hypopigmentation, said “The Da Vinci Code” will be the 68th movie since 1960 to feature an evil albino.

That’s pretty startling. I can’t think of any “good” albino characters though I’m not sure there haven’t been any. But either way, that’s a lot of bad guys stemming from one rare condition. And it puts people with albinism in a peculiar category. Certainly many minority groups have been ill-served in movies, and women also have usually been portrayed in limited and stereotyped ways. Sometimes this takes the form of ridicule, as with minstrelized depictions of blacks, or “hysterical” women; sometimes it is a degrading cultural stereotype, such as the countless shiftless or criminal black and Hispanic characters. Sometimes it is simply the reinforcement of pervasive myths or stereotypes, as with Italian-American characters always being associated with the Mafia, or fat people shown as jolly and dimwitted. But with all these groups, there is typically some range of depiction. Little people (dwarfs and midgets) were often forced into ludicrous roles intended for humor, but, over time, several such actors asserted themselves and earned respect and more substantive portrayals; even when type-cast, they were found in a variety of roles, not always as villains or comic-relief characters. Women as a whole have been subject to extreme sexism in movies and TV, but have also chalked up many outstanding performances in challenging roles; the same is true of people of color, overcoming racist casting, and with many other groups as well. But people with albinism always seem to be cast in a negative light. That’s offensive, certainly, but somewhat odd as well.

It raises questions about the way we respond to biological abnormality – why it is that there is such a pervasive, and broad, tendency to react badly to individuals whose body image departs from the species-typical norm. There is a growing body of sociobiological research indicating that humans are pre-wired to respond positively to species-normal body images, particularly in infants, and to react subtly to images with abnormalities even when the subject cannot consciously articulate what is unusual about them. People simply seem to react strongly to the unusual or abnormal – and it is easy enough to whip up one of the usual sociobiological Just-So Stories to explain why (“identifying sickly individuals is important in order to avoid reducing your reproductive potential by investing resources in, or mating with, them”). Whether we really do have an innate ability to recognize subtle abnormalities, and whether we have an innate drive to reject them, are still open questions, but it’s not impossible to imagine either one.

That doesn’t explain why albinism, especially, should come in for such universal damnation. One can go off on flights of projective fantasy: perhaps the “eerie” appearance of people with complete albinism – red eyes, translucent pink skin, shockingly pale coloring – or their habits – avoiding sun, frequent blinking, dark glasses – make them spooky or off-putting in a way mere racial minorities are not. Perhaps there is an invoked fear of the alien or the ghost – someone not quite like us, but close enough almost to be mistaken for one of us, and thus dangerous. Perhaps they’re just one of the last unchampioned minorities. And, very likely, any such speculations reveal more about the speaker than the subject. (For the record, I’m not afraid of ghosts, though I am afraid of the dark. But not because it has ghosts in it.)

“Normativism”, like racism or sexism, may in the end turn out to be an overdetermined phenomenon – there are likely many reasons for it, most learned, some perhaps inherited, but all of them overlapping in each individual in complex ways. Rejection of the deviant would then be the default expectation, with increasing acceptance of non-dominant-group characteristics as normal moving those groups, a bit at a time and one at a time, into the mainstream while others remain “exotic”. On this hypothesis, anti-albinism should gradually become logically (I did not say emotionally) untenable if the public relinquishes its academic pre-conceptions under the influence of religious and public. But again there is that unbroken string of almost 50 years’ worth of albino movie villains as a counterexample.

The issue touches, as you knew it would, on the issue of patient values and the possibility of patient-autonomy-directed healthcare professions. Increasingly, the goals and expectations of treatment have become more and more available to the empowered, autonomy-wielding patient. Patients are demanding more control over their treatment,dictating their own expected treatment goals, and more-aggressively choosing both treatments and outcomes that deviate from “medical need” as defined in some essentialist physical sense.

This trend drags in with it a looser sense of medical necessity or medical essentialism. If patients can choose what outcomes they want and , in fact, what they regard as good health, then we can only accomodate patient autonomy within a broadly-defined healthcare system that either dispenses with the notion of health, or asserts that there is no defensible objective notion of health.  We must accomodate ourselves to seeking health with the understanding that that term may operate very differently for different patients, that one may choose one’s definition of “health” as a prerequisite to choosing the treatments that lead to that preferred end state – no matter what end state that is.

I think some conceptual shift of this kind is a necessity as an adjunct to robust patient autonomy and an autonomy-centered ethics of healthcare. Some patient-advocacy groups have already been contributing to that shift, especially gay, deaf, and disability activists, who have all mounted fundamental, and successful, challenges to narrow definitions of “species-normal” or “healthy” function. Perhaps albinism is poised to join that list. If it does, it will, I think, make a necessary contribution to the general acceptance of the idea that no unilateral and “objective” definition of what does or does not comprise “health” is possible. We need to re-conceptualize health to make it fit the complicated lives of those who see health as one good among many. Accustoming ourselves to those among us who do not fit existing norms has moved us far in that direction, and I believe usefully so. It has liberated the practice of healthcare from a definitional straitjacket at the same time it liberated so many patients from their diagnostic straitjackets. And now another step on that path looms.

Teaching ourselves not to see people with albinism as “spooky”, “alien”, or murderously evil movie villains – to see albinism as one of the many ways of being human – will also create space for those who choose non-standard body images to situate themselves within the expanded conceptual boundaries of “normality”. That is a much-hoped for state.
Hat tip: Bioethics.net