Saturday, December 1, 2007


I have spent much of the past week in the hospice wing of Beth Israel hospital and I am not feeling too kindly toward medical professionals, yet when all is said and done, I don't think Oliver Sacks is guilty of ethical shenaningans. I agree most strongly with Leonard Cassuto's assertion that "Sacks’s work argues that people will want to stare, and the best way to counter this desire is not to forbid it but to shape and direct it, to make the gaze into a mutual look, a meeting of two worlds." Sacks's work wouldn't be as popular as it is if there weren't a market for it, and better to have his style of presentation than, say, a Ripley's Believe It or Not type show featuring the same patients Sacks has introduced.

Yet, in all honesty, if I saw a preview for a Ripley's-like show about people with diseases/disorders of the brain, I would still want to watch. And Sacks may be a very good writer, but if I skimmed any of his histories, it was the parts not about the patient, like his description of the mountains while flying with Bennett. I am interested in the tics, the obsessions, the bizarre. A nature writer can give me the Rockies; I turn to Sacks for neuro-porn. And if I couldn't get it from him, I'd go elsewhere. To invert LeDoux's final sentences, I am my synapses; they are who I am. Thanks to Sacks and my own nature as a reasonably compassionate person, I would not mistreat anyone I met with one of the disorders we've learned about, so I feel no need to apologize for or defend my fascination with the wild workings of the brain.

As Anne Hunsaker Hawkins described, I think Sacks's emphasis on the entire patient, the "sense of the character, life-history, important human relationships (with both family and staff), and personal values and goals of the individual patient" that he includes in his histories can't be anything but beneficial. As we've seen with the confabualtion disorders and those that involve disinhibition, the personality of the patient before onset of illness is critical to understanding who the patient has become. This week's LeDoux reading touched on this as well, changing connections changing personality. And after my week of dealing with doctors and nurses, I wondered how Sacks's approach to patients could benefit family members as well. Imagine how comforting it would be to have a doctor who learned about all the people supporting a patient, how much more effective the doctor may be if he/she considered the person being spoken to, rather than following some standard script. But doctors don't have time for that.

Friday, November 30, 2007

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.

The Actor's Life.

Well this will officially be my last blog (hard to believe that!) and I couldn't have been happier with the reading selections for the week. The readings offered a greater cohesion of ideas we've all had the pleasure to discuss, argue and talk about these past few months. In going into this class Elizabeth told me that I would have a better understanding of myself as a human being, and perhaps a little more leniency with some of my own person "tics," not to say that I'm a big confabulator or anything...

LeDoux quotes on pave 301, "If we want to understand how our brains make us who we are, we have to figure out how [the
] Individual process blend together to cause a person to emerge effortlessly from the electrochemical activities of... his or her brain." Simply, you must look at the whole of you mine to understand "who you are-- who who, who who?"
Speaking of whos and hoots, I think that lyric by the Who tied in beautifully from our reading from Sacks, "The Surgeon's Life." Sacks explains, "any disease introduces a double ness into a life-- an "it'" with its own needs, demands, limitations" and a person afflicted will suffer to seek balance between their own desires and the "alien will of the "it." As we see in Dr. Bennett and throughout the course, balance is such a key part of illness. How does one cope with an illness? How do they find a calm in the storm of their lives? In Dr. Bennett's case that was to strike a balance between professionality and the mentality of his illness, when and where he could tick, if that meant looking down a hall before skipping, that's what it took. In the past we've seen Sack's patients like Mr. P and Witty Ticky Ray who found music to soothe their pangs of illness, to find a balance with it. I think as a society we are so ready to label and classify to understand who we are. That this person suffers from schizophrenia. Where as Sacks offers us a better understanding using Tourettes as an open example: "The toureet's and the self shape themselves each to the other, come more and more to complement each other, until finally, like a long married couple, they become a single, compound being" (Sacks 77). Exactly like that of our experiences. Not one single moment or event or part of our personality shaped our life, nor does a disease solely explain who a patients is.

Sacks goes on to further drive home the point "neither a biological nor a psychological nor a moral-social viewpoint [on understanding illness and self] is adequate; we must see Tourettes [or any illness or personality] not only simultaneously from all three perspectives, but from an inner perspective, an existential perspective, that of the afflicted person himself. Inner and outer narratives here, as everywhere, must fuse" (Sacks 78). Haven't we been reading about this all year? Our narrative like that of our brain MUST work together to form a conglomerate of who we are. It all ties together to create a tapestry of self, several strands from different aspects and perspectives to create the fabric of our being.

Just because Dr. Bennett has Tourettes syndrome doesn't mean that is all he can be. He's also a father, a husband and a (as shocked as I was) a surgeon. I hate to admit it but I had a hard time separating out how it was quite possible for him to pursue any profession with his limitations, until he explained it to me in his own words, "most of the time I'm operating, it never even crosses my mind that I have Tourette's" (Sacks 97). Well, it only takes one look at my title to see how that made sense to me. Yes, he lives a surgeon's life: completely focused on the task at hand. I can imagine that saving lives and removing tumors is rather taxing on the mind, no surprise that that focus and pressure channels the minds thoughts away from ticking. I cannot explain this in any other way but as an actor. When I'm on stage, lines memorizes, lights up and I'm acting, of course I'm still Matt Nicholson but not in that moment, I'm Aladdin on a magic carpet, Oscar Wilde in England past or I'm high kicking in A Chorus Line. My mind is so focused on what comes next (what movement, what emotion, what scene, what line, what song) that I do not have time to mentally go through my grocery lists of read a book. I have a task at hand, and that is exactly like Dr. Bennett, once you've practiced something so much like surgery and the information behind it, the path of surgery or acting is so easy to slip into.

"That the synaptic self can be a curse-- it doesn't take much to break it apart. But this is also a blessing, as there are always new connections waiting to be made. You are your synapses. They are who you are" (Le Doux 324).
I think that we've all come to know this in college, and particularly in this class. So often I realized that my conceptions of the mind and illness were so off base. Every time I enter class I had to remind myself that our memory is not a large warehouse that one portions of the brain like the amygdala does affect the whole if damaged. So thank you all for speaking your minds, challenging my ideas and putting it all out there. It doesn't take to much force to change an opinion (when backed up with evidence of course-- we did talk about that in class: When you're the only one battling for your feelings and EVERYONE else has evidence, you're more ready to be knocked down) but remember what we know may possibly change as technology and knowledge itself grows, so keep yourself up to date! You are what you know and do; you are your synapses-- so in that case, learn all you can! And good luck tying up all your conference work, I look forward to seeing them all!


Sunday, November 25, 2007

Oh dear...

Well, we've finally come to the end of Powers' novel. I'm going to be completely honest and just say from the start that I didn't like it. I suppose the actual truth of it is that I was ambivalent about it, but I was ambivalent for all 451 pages of it. He attempts to inspire a philosophical thought process in the reader, but it seems to me that he always falls short. His musings continually struck me as lack-lustre compared with the other material we read over the semester.

And then of course there's what I'm sure we'll all be talking about on Monday: the ending. Honestly, I didn't know the specifics the whole time, but I saw this one coming. There was something perpetually--and by the last quarter of the book, annoyingly--concealed about Barbara. Her nervousness when talking about medication, her continual self-deprecation...and the fact that she was such a lower level character for most of the book made her the perfect candidate for the big twist finale in a very classic-mystery kind of way. I suppose the revelation that she was trying to commit suicide and stepped in front of Mark's car was sufficient enough to get me excited, but somehow I had lost interest in ALL of Powers' characters by that point. They return continually to their ridiculously unfulfilling lives. I suppose this was one of the points Powers was trying to bring across with the whole crane metaphor, but by the end it just got redundant. Everyone messing up their life to various degrees. Nothing is ever resolved, like the book itself, really. I know, I know--in the end, people are just people. But honestly, you have to give some kind of denouement. But no, throw in an off-hand mention of how Mark is perfectly normal now and move on.

In the end, I feel that the main problem with this book is that it is simply too linear not to have any real kind of story arc. It seems like Powers could have written it very well if it were more disjointed, more about vignettes in the lives of people. He does this to a certain extent, but when he strings them together the way he does we end up wanting it either to be a typical story centered around the events, or else to be about character development. And it really isn't either of these. He gives all of the parts of a typical story and then doesn't follow through with any kind of cohesion.