The Traveling Neuroanthropologist: Sacks and Ethics

This week's reading, in bringing full circle the material we've studied all semester, also investigates the questions of ethics that we've been raising in class. Is it ethically permissible for Sacks to write about his patients in this way? Is his work a contribution to the understanding of neurologically different people, the fascinating range of disorders and syndromes, and an attempt at increasing our empathy and understanding for them, or it is a shallow and exploitative, P.T. Barnum-like attempt to sensationalize and expose the mentally disabled community?

The three essays we read on this topic, by Hawkins, Cassuto, and Couser, all seem to reach the middle ground on this question. While there are aspects of Sacks' work that are certainly problematic -- such as Heidi, the girl with Williams' syndrome that he refers to in the third person and hurts the feelings of while forcing her to perform a task to show her disability -- he does manage to tread a level path, may not have a binding responsibility to adhere to a biomedicinal code of ethics while working in the realm of personal memoir, and develops as a writer during the course of his case studies. It's true that in Hat, as pointed out in one of the essays, uses freakshow-like names (The Disembodied Lady), displays a much less refined version of his technique, and focuses on highlighting the shocking nature of the patients' disorders rather than their development in whatever other social or psychological spheres may be open to them. Yet, throughout, Sacks takes care to camoflauge them under pseudonyms and doesn't, for example, include photos or medical diagrams of them (especially something awful like their face with eyes covered by a black box, such as found in medical textbooks). As Couser's essay highlights, there is a stark difference between keeping their personal identities anonymous and denying visual representation then there is in contrast with the immediate and visceral response that a person being physically stared at would feel.

Sacks' style as a biographer and investigator grows and changes considerably in between Hat and Mars. The cases he selects in Mars take care to include the patient's representation in all facets of life; in A Surgeon's Life, about Dr. Carl Bennett, we see his life at home with his wife and children, his passion for flying his plane, and the great care and precision he takes with his work despite the fact that he has a condition that many see as exemplifying the complete opposite. No charges of exploitation can reasonably be leveled against Sacks in this essay, otherwise we'd find ourselves in an awkward position of having to argue that no medicinal and psychological exploration can ever be done. Bennett has a condition that makes him different, true, but writing about it, and contributing to our body of knowledge on the work, cannot be censored on charges of "exploitation" without crippling our scientific and cultural progress. We are a curious people; we want to know more about our surroundings and the permutations that our fellow man can undergo. It's not "us vs. them." If anything, Sacks is helping bridge a chasm by showing us, at least in this work, how very much "they" are like "us," and that such distinctions and prejudices are petty and unnecessary; they are just like us because, well, they are us.

And besides, if we charge that the mentally disabled are not legally able to consent to their images, stories, and conditions being represented in published literature, then we ourselves are the ones who are dehumanizing them by dismissing their ability to make any choices for themselves. It was mentioned that some see the display of disabled people as low-grade shock value and freak-show exploitation no matter if they were participating willingly or not. I'd never advocate for keeping someone in any situation against their will, but if the performers celebrate their oddity and conceptualize it as a key part of their mental identity (as has also often been shown in these stories and reports) then why should they be denied the chance to have a life of their choice? Wouldn't it be much crueler if we presumed to know what was better for them by virtue of our "normal" brains, and therefore forced them into a "normal" life? We are becoming in fact too dangerously holier than thou here. Those who cry foul and try to make disabled people fit into the mainstream -- even if it may be against their will -- are every bit as guilty as those they accuse. If we respect them as humans such as we say we do, then let's start by respecting their own choices. How is it any different from a "normal" person choosing to fly hot air balloons, climb mountains, be a fire-eater, work in a circus? We don't shout "Exploitation!" when we see that. By claiming foul play, we are in fact continuing prejudice against the disabled by assuming that they don't have enough self-identity and personal compass to make informed decisions about their own life and that we have to shepherd them through the "proper" stages. It's hypocrisy.

We shouldn't give Sacks an entire carte blanche, as the essential nature of his work is to ferret out those with differences and attempt to interpret them to the public, but it seems to me that criticisms of his so-called "P.T. Barnum" nature are grossly general and overreaching. While he is often extraordinarily sensitive to his patients' needs, he does occasionally breach them, as noted in the case of Heidi. But as also noted, Sacks does not cut that footage from the final film, although he tries to deflect and re-direct her criticism. When she asks him to stop filming, he does so immediately; he doesn't keep the camera rolling for the sake of capturing data at the expense of the patient's personal feelings. There are far worse examples to level charges of exploitation at aside from Sacks.

Hat is undeniably a bit problematic, but as Sacks matures as a physician and writer, he takes time to mend this flaw. His work is in a tricky gray area between medicinal text and personal literature, and it's been examined whether he has a definite need to adhere to the traditional patient/practitioner trust system. He's writing much more about people in Mars, people who just happen to have a different way of viewing the world that's beyond their control. In Hat, this technique is somewhat sloppy and suspect, but there are no photos or real names provided for his patients; someone can and probably has, many times, passed them on the street if they've returned to their regular lives. Once we reach Mars, the human element shows much more clearly, and we can read it as a biography of unique and interesting people without having to attack the mediator.