Sacks and Ethics

As I did the reading for this week, I found myself feeling very protective of Sacks. I remember, early in the semester, when we were reading Awakenings, my cursory Google search of Sacks revealed that there was great hostility toward him, among book reviewers and medical professionals, and their criticism always had a weird personal quality to it, a whiff of undignified animosity. Alexander Cockburn is an example of this, and so is Tom Shakespeare. Although--to be honest--I find their criticism thoughtless and hard to take seriously, I do want to be sensitive to the real ethical complications and questions of Sacks’s work (notably, these are not the issues that Cockburn and Shakespeare address; they are dismissive rather than critical).

There are basically three ethical concerns that Sacks has raised for me personally. The most significant difficulty I’ve had with Sacks--and this is something I’ve spent a lot of time thinking about--is the fact that he consistently chooses the most extreme and rare cases, rather than trying to elucidate the more common varieties of neurological difference and/or damage with his warmth and erudition and depth of insight, so as to make his work of practical benefit. It’s the deliberate seeking out of impressive and unusual cases that, to me, has a faint suggestion of freak show. Another thing I find problematic about later Sacks is the ambiguity of his role: I felt much more comfortable with the cases in which Sacks was present primarily as a doctor, the best example of this being Awakenings. There, his presence is clearly justified. But with Temple Grandin I was very unclear about what exactly his stated reasons for being with her were. I was curious how he had explained the situation to her, since she didn’t seem to find his presence strange. With Temple Grandin, as with several others, he was in the role of voyeur, primarily. My third concern has to do with his films specifically. I sort of tense up when I notice that Sacks is talking about the patient or subject as if he or she weren’t in the room. That feels like a kind of dehumanization, when you talk about people like museum pieces. But the matter Sack’s ethics is trickier than my criticisms suggest. A lot of what I’ve highlighted is defensible.

As we’ve discussed, there can be some benefit to looking at the extreme cases. They have a way of revealing general principles about the brain. I can see how his writing about Parkinson’s could really alter, for the better, how physicians and lay people understand the condition. Moreover, he is to some degree a creative writer; he is to some degree an entertainer, he is to some degree an educator; he is a public intellectual. A former fiction teacher of mine would ask of a story the Passover Seder question: Why is this night different from all other nights? Or, what is the conflict here? Why is this story of all possible stories worth telling? Why should we care? This is to say, stories are about exceptional happenings. Even stories that claim not to be--like Mrs. Dalloway--can’t help transcending the mundane. If we view Sacks as a short story writer, as I most certainly do, it is perfectly understandable that he would choose the extreme cases.

The ambiguity of his role is problematic, not because I think he ought to take on an especially rigid role for its own sake, but because I think it creates confusion for the person about whom he is writing. I would feel awkward for that reason if he were writing about me. I wouldn’t know how to relate to him or what to expect from him. I wouldn’t be sure whether he was there to help me, or whether he was there to look at me and study me for someone else’s benefit or his own. When he puts on his doctor cap, this problem mostly goes away. A lot of the ethical muddiness dries up. But, on the other hand, stepping out of the doctor role gives him a little more latitude, which can reveal aspects of a condition that are otherwise hard to get at. He can be more flexible in the way he interacts with his subjects. He can see them in a wider variety of contexts. He can elicit different reactions. We can learn some subtle things if he isn’t strictly in the doctor role.

What I don’t find defensible is his habit--albeit occasional--of talking about subjects and patients as though they are not there or cannot hear or cannot understand. Some of his commentary, even if it’s astute, is painful to hear directly and could be better received in final essay form, with necessary qualification. It’s not that the content of his remarks is wrong; it’s that he, in these instances, treats people like objects, and this goes against his project.

Okay, I’m tired.

Boundaries, eh?

I found the articles dissecting Oliver Sacks’ anthropo-literary style very intriguing. Throughout this semester, I have been struck by the boundaries I would normally assume to exist between patient and doctor being blurred and, in some instances, nonexistent as regards Sacks and his subjects. For the most part, I was happily surprised at the manner by which Sacks seeps into the lives of his patients and, comparatively, he he allows them to seep into his life. This reaction was especially prominent when reading sections from An Anthropologist on Mars, wherein he traveled to Pontito with his eidetic memory patient, Franco. In turn, seeing Sacks zonked out (for lack of a more apt term) on kava juice (?) as he explored Micronesia during The Island of the Colorblind. Indeed, Sacks provides his readers not only with a portrayal of his subjects, but also (as Couser points out in reference to Sacks’ films) “Sacks himself enters the frame; he, too, is available for visual inspection, as is his interaction with his subjects.” His presence is also repeatedly felt throughout his writing, wherein he continually analyzes how he feels about his patients, their dispositions, and his philosophical ideations.
There is also a part of me, however, that wonders about how much blurring of the boundaries between a patient and a doctor is appropriate. Should there be fine lines of demarcation? I know, in situations I’ve been involved in, there has always seemed to be somewhat of a dichotomy (involving power levels) between my status as a patient, seeking “treatment,” and the doctor’s status as the treatment provider. [I have, however, been known to foster somewhat dichotic views, and so perhaps more of my own perception may account for these ostensibly clear-cut delineations].
I wonder also, however, especially in light of all our readings for this semester (especially Joseph LeDoux’s), whether it is indeed better to have less rigid boundaries. In fact, when I call the Echo Maker to mind, it seems that conceiving of boundaries as fixed and inflexible entities is absolutely false—and one would be pathological to assume this as truth.
Indeed, as LeDoux asserts in our final reading of his “Synaptic Self,” though different brain regions are distinct in a cytoarchitectonic and organizational sense, to conceive of our neural structures as distinct, isolated entities is inaccurate. Each depends upon another to carry out its function, and thus illustrates the fluidity of perceived distinction.
Overall, then, it’s difficult to decide what my stance is on Sacks and his dealings with his patients. In no way do I agree with the authors who deem his interactions violating or reminiscent of freak shows. However, I think that his style of patient-doctor relationship certainly transgresses conventional lines. That said, I do believe this method helps bridge the gap between the pathological and the non-pathological. So much of Sacks’ work, I feel, results in a clearer image of what it might be like to be one of his patients. Indeed, a more integrative and holistic perspective is provided by all of his publications, wherein the reader (unless, like Cockburn, s/he decides to hate the man for no good reason) gleans a novel perspective, free from typically binary modes of thought (i.e. seeing a disorder only for its diagnostic criteria). And so, in conclusion, I would say that there’s a great deal of ambiguity here, which parallels the ambiguity Sacks introduces into his work. In turn, I feel that this ambiguity is a more accurate reflection of reality, in that conceived boundaries are, well, conceived. Changing. In flux. Not entirely solid or stable.
I appreciate this perspective, and recognize that it is not one to which I have generally adhered. Thus, as a result of reading Sacks, Powers, Skloot, LeDoux, and others (who have, in particular, seemed to promote the notion of flexibility rather than rigidity in their perspectives) my synapses seem to have done a little readjusting. Thanks, guys!

Shakespeare the Ideologue & Sacks' Ethics

I began this week’s readings feeling unsure about the moral purity of Sacks’ work, but the three critiques — coupled with “A Surgeon’s Life” — have helped me toward a clearer position in favor of Sacks, though not necessarily because I agreed with what I read.

My most significant disagreement is not with an arguement we read directly, but with one that was paraphrased and deconstructed for us: Tom Shakespeare’s. I do not know much at all about Tom Shakespeare*, yet the (what seemed to me) strangely misdirected ire that he targeted at Sacks immediately placed him in an unfortunate category for me. He became akin to Michael Moore and Ann Coulter: an ideologue who makes exaggerated, misleading, or even deliberately false statements in order to further a cause. To my mind, this behavior undermines rather than supports the cause in question because it presents a detrimentally simplistic perspective. My impression from reading Couser’s quotations and paraphrases is that Shakespeare is more interested in drawing focus to the persistent marginalization of the disabled by the medical community than in the ethical strength of Sacks’ writing. He makes accusations that seem to have no bearing on Sacks’ actual writing. Shakespeare asserts that Sacks is interested primarily in profiting from his patients’ stories (qtd. in Couser 7), which, if sincere, seems like shallow guesswork made by a poor judge of character. 

Sacks is clearly a kind-hearted and generous doctor. Nearly everything in Sacks’ writing has pointed toward a patient-first attitude that is not only willing but eager to find a living, relatable person in even the most severely disabled patients and subjects. In spite of Shakespeare's accusation that he writes to make us "marvel" at his "expertise," Sacks humbly admits his mistakes where he sees them: “Some things, one might think, would be completely out of the question [for someone with Tourette’s] — above all, perhaps, the intricate, precise, and steady work of a surgeon. This would have been my belief not so long ago” (Sacks 79). Admittedly, he is not always successful: his dismissal of Heidi's complaint in the department store shows some methodological coldness (Couser 5). 

Fortunately, Sacks is constantly examining and re-evaluating his own perspective and assumptions about disease, and this is perhaps no more apparent than in the chapter from the book that we read for today, the same book that Shakespeare supposedly reviews. I agree with Couser that Shakespeare quite possibly “formed a negative opinion of Sacks on the basis of the earlier volume [The Man Who Mistook His Wife for a Hat] and was unable or unwilling to qualify it in reviewing a subsequent book that is far more ambitious and accomplished” (Couser 8). Shakespeare judges Sacks only on his most sensationalist book, which would not look so much like that "high-brow freak show" (Couser 2) for which the likes of Alexander Cockburn despise him. This hollow attempt at an argument, which Couser generously calls "succinct" (Couser 2) is so glib and moronic that I am tempted to make fun of the Nation columnist's name in like fashion.

Shakespeare also complains that Sacks is monological in his presentation and fails to give the patient perspective sufficient space on the page. But I am more inclined to agree with Anne Hunsaker who says, “To compare Awakenings to the conventional [monological] medical history is to trace a movement away from "authoritative discourse" and toward dialogism.” Shakespeare’s complaint presumes an niche perspective of a general-audience writing; that is, he is preoccupied with his own idea of how many personal testimonials he would have liked to see. He is interested in the unfiltered perspective of the sick, not their doctor's attempt to synthesize patient and physician. Perhaps in Sacks, Shakespeare was looking more for direct quotations, but it seems that more generally he wanted a journalist to document the diseased or disabled perspective, not a neurological interpreter to weave a narrative case study, however humanist the tone. 

* I do know that Tom Shakespeare is himself disabled, and I guiltily wonder if his own sense of marginalization (probably not a real word) or his affinity for the chronically ill gives him a distorted or instinctively confrontational perspective on the work of a doctor writing about his patients. I am guessing that this is an offensive idea to some, especially since I am presuming to psychoanalyze a person I have never met, but it is the only explanation I can think of for such a respected voice in the scientific community (I did a little internet research) voicing such irrational outrage against a man who has done much for a cause he also promotes (that being the social acceptance of the neurologically atypical or handicapped). 

P.S. I have noticed that I have a habit of misspelling “Sacks” as “Sachs.” Perhaps this is from seeing “Goldman Sachs” in the news too many times. Please forgive the error. 

A Retraction of my "wrong", and further thoughts

At the end of our last class I threw around the word "wrong" a lot. I'd like to further clarify what I meant. I don't think of what Sacks does as "wrong", explicitly--rather something about reading narrative case studies feels wrong to me personally. Voyeurism and exploitation of others are things I try ardently to avoid, as a scholar, artist, and human being in the world; and I know that the work of Sacks is sometimes read for those purposes.


I found Cassuto's analysis of Sacks' work thoughtful and fascinating, though I also discovered some holes in his argument. In his metaphor of the freak show, Cassuto neglects to reflect on the charlatanism rampant in that tradition. Of course, of course, many of the "ringmasters" did travel the country, seeking out (and even trading amongst themselves) people with medical oddities. But they also would use makeup, props, and sleights of hand to create the illusion of a freak where there was really only an out-of-work actor. Somehow this knowledge shifts Cassuto's metaphor for me, and slightly invalidates it, though I understand his use.

Secondly, I objected to a specific evaluation he made: "Sacks is writing narratives of wonder at a time when wonder is hard to come by. These wonder narratives wind up creating a uniquely collaborative space within which disabled people can express themselves--rather than closing one off" (329).

Now, I would argue that the people represented in Sacks' narratives are not "express[ing] themselves". What is expressed is Sacks' own perception of their self, which is an entirely different beast. I also think the degree to which this process is "collaborative" necessarily depends a great deal on the abilities/lucidity of the individual patients. Someone like Temple Grandin, for instance, has a deep understanding of how she is being portrayed and is participating actively in shaping Sacks' narrative of her (as well as writing her own, of course). Someone like Jessy Park, on the other hand, doesn't have the same kind of grasp on what it means for her to be in Sacks' documentary. I wouldn't call her a "collaborator". This is a term Cassuto returns to often, and I question his choice.


To go back to this idea of "wrong". I really appreciated Hawkins' comments on Sacks' project--and I agree wholeheartedly that his approach is novel and commendable. To be as a doctor a "traveler into the world of the patient" is brave, difficult, and compassionate. I do support the work. Sacks clearly comes across, both as a writer and a man, as a compassionate, thoughtful, respectful, curious, engaging individual. I understand how his work has broadened the public's mind to ideas of difference/the neurotypical, living with disease, etc... and honestly, his work also entertains, titillates, and provides scintillating stories. The problem for me only lies in the extremely public display of other people's lives, because you can't control how it will be received. As someone who has lived through an array of medical emergencies and strange conditions, I personally am concurrently very open and very protective of those details. I feel no shame when relating a story from my medical history, but at the same time, *I* want to be in control of that information, *I* want to be able to present it and myself. Therefore, I feel a sense of guilt when reading Sacks' work, alongside the intellectual interest and pleasure in his writing style. This is what feels "wrong". Does anyone else feel this way, or is it particular to me?

Studying the relationship between emotion, memory, and perception in Autism

Losh and Capps' paper brought to my attention many ideas about the relationship between emotion, memory, and perception.

In one instance, they cite other studies that suggest "experiences rendered through narrative are more likely to be consolidated in memory". Typical children developed the narrative form of response when recounting emotional incidents, and L&C believe that this supports the "prospect that narrative activities may be integrally involved in emotional appraisal and that autistic individuals' noted difficulties with narrative, could, in part, inhibit their capacity for appraising emotional experiences and constructing emotion concepts and memoryies"

This presents an interesting relationship between formation of a narrative, and appraisal of emotions. It suggests that emotions are determined after the formation of a narrative, rather than the reverse. Yet we often address other individuals' emotions and seek reasons / create a narrative afterward.

L&C address this, and acknowledge that autistic individuals certainly posess less elaborate memories of emotions, (as Grandin suggested), and that formation of narrative is not cognitive bottleneck. They believe that memories of emotional events create a "knowledge base... on the causes, consequences and subjective meaning of affectively charged happenings, and that Lacking such a repository could render autistic individuals disadvantaged"

Still, the question remains as to why this knowledge base is not created. This leads me to believe that a core question in autism is studying the relationship between perception and emotion, or perception and creation of narratives. L&C point out the autistic group's tendency to point out the visual elements of emotions (angry faces, sad faces, etc). This leads us to believe that the understanding of emotion that this individuals have, is based more in visual-word association than some 'deeper' emotional understanding or empathy.

It seems that understanding social interaction, requires the need to process emotional information, which seems to be a consolidation or 'essentialized' form of information. As was emphasized in the Rage for Order film, the brain of an autistic individual is structured in such a way that it appears to prefer processing closed, predictable, and physical systems.

This reminds me of a hypothesis for Autism called, The Intense World Syndrome. As it proposes: "...the core pathology of the autistic brain is hyper-reactivity and hyper-plasticity of local neuronal circuits. Such excessive neuronal processing in circumscribed circuits is suggested to lead to hyper-perception, hyper-attention, and hyper-memory, which may lie at the heart of most autistic symptoms. In this view, the autistic spectrum are disorders of hyper-functionality, which turns debilitating, as opposed to disorders of hypo-functionality, as is often assumed."

This in does seem compatible with what the University of California researcher in the Rage for Order film was talking about --a deficit in that kind of coordinating ability that is apparent in the cerebellum. It may be that a dysfunction in this area is what allows hyper-sensitivity to perceptual information., or that hyper-activation of those circuits is what causes disfunction in the cerebellum, as researchers of that theory might propose.




As a side note, I just wanted to say/complain:

Reading Understanding of Emotional Experience in Autism: Insights From the Personal Accounts of High-Functioning Children With Autism, gave me a new found appreciation for the writing of Oliver Sacks and other narrative-neuro writers.

Take for example, this idea of understanding autism through a "discourse analytic framework", or, the great phrase, "personalized causal-explanatory narrative frameworks". I can't imagine anyone who doesn't have an hour to read the paper understanding this. Thankfully, we have writers who address the general public, letting us know that what the authors really mean to describe are, "recorded conversations" and "personal stories" respectively. Some fields are much worse, but this paper reminded me of the great need for popular science writers who can convey specific ideas in more accessible ways.

Nothing new under the sun

Sachs' investigation of Stephen Wiltshire's drawing and Temple Grandin's discussion of her visualization-based drafting process challenge the conventional understanding of what it means to be an artist. We take for granted that an artist (I will, for the sake of simplicity, stick to visual art) renders an image from his imagination, and that art, therefore, is a product of imagination. Certainly, most of the art that fills the world's galleries is taken from life, inspired by or modeled on a scene that took place in reality. But art is not an automatic reproduction. It is created with style and intention. Art speaks; it has a message. Even photography can be more than pure journalistic record-keeping. A photographer frames an image and makes it his own. He manipulates his instrument to emphasize what he judges to be the salient features of a scene. Through the enumerable choices made in shooting and developing, a photographer communicates, and documentation is turned into art. But is Stephen capable of more than documentation? Is he an artist?

I argue he is on both counts, and there are a couple of reasons for this. First of all, he is driven to draw. His compulsion seems to stem, in the most general terms, from a need to make order out of what he perceives and, in rendering it, to communicate that order. I don't mean that Stephen is trying to reach out to the larger public — Emily Dickinson wrote the vast majority of her poems without any apparent intention to publish them; they were a way of communicating with herself — but he is solidifying his perception of the outer world into something tangible. Second, he interprets.  He adds details and ornamentation to buildings for both aesthetic (the chimney on Sachs' house) and symbolic (the flagpole in his yard) purposes. Jessy Park's psychedelic coloration is similarly interpretive and has an individualized style that parallels the warm lines of Stephen's later drawings. 

The additional perspective we get from Grandin is problematic. Her mode of piecing visual images together to make something new seems to be echoed in Stephen's creative alterations and additions. Is it truly art if he is only mechanically stacking visual images like building blocks? I think this is a false distinction. Grandin's process merely literalizes the common method of all human creative output. Nothing comes from nothing. An artist takes in what is pre-existing and makes a new pattern out of the old pieces. The pieces themselves are eternal, though we add new meanings to them as our memory of associations grows. So to strip Stephen of his artistic mantle would be an act of supreme arrogance on the part of the neurotypical. It would require belief that the neurotypical artist can make something out of nothing in a manner beyond the ken of an autistic one. 

"a scientist trying to figure out the ways of the natives"

I'm going to start, if I may, with a personal anecdote. Trying to write this response has been uncommonly difficult for me, because the subject matter is so personal and so difficult for me to relate to people. I was diagnosed with high-functioning Asperger's syndrome when I was sixteen and, despite the fact that there has been a good deal of research demystifying Asperger's and the autism spectrum, it really something isn't something that I like talking about. Immediately following my diagnosis, my mom reacted very negatively, trying to find any alternate diagnosis to explain the experiences and symptoms that I described and that were noted to my psychiatrist, maybe because she was a concerned parent still operating with a set of beliefs like the "views" noted by Capps and Losh "that individuals with autism do not experience or express emotions (e.g., Bettelheim, 1967)" or "that autism involves an absence of emotional expression and indifference to others (e.g., American Psychiatric Association, 1994; Bettelheim, 1967; Kanner, 1943; 1971)".

Of the conditions we've studied, the disorders on the autism spectrum strike me as being among the most subjected to negative social stigma, along with epileptic disorders, which I also had the privilege to write about. I feel a bit hypocritical for this, but while I find the stigma surrounding epilepsy to be rather outdated and highly motivated by superstition -- the experiences of epileptics are such a radical break from neurotypical people that one of the most logical ways to explain them without using neuroscience are through falling into the realms of the unscientific and unrealistic -- I honestly can understand the stigma against autism spectrum disorders. As LeDoux made a point of discussing in last week's reading, emotions are exceedingly difficult to explain through the same methods in which neuropsychologists describe other phenomena, but they are too inherent to the human experience to ignore.

Considering this, the notion of someone's brain being so neurologically atypical that they have marked difficulty understanding and relating to their own emotions and those of other people, experiencing deep a 'disconnection' between themselves and the rest of the world, naturally seems foreign, strange, and even impossible to understand. Even living with it myself, I don't understand much of my own experiences and my family has even greater difficulty doing so, though having the context of Asperger's gives us a framework within which to work. Reading the selections for this week has been difficult for me to sort through and, thus, respond to because so much of it is simultaneously familiar and alien. For example, while, I could empathize with Temple Grandin on many counts -- her experiences with finding the right course of medications, for example, struck a chord, albeit for different reasons -- other parts of her descriptions of her experiences were so far removed from how I understand things. Her early notion of "thinking in pictures," for example, was strikingly other.

The otherness of autism spectrum disorders is, though, what I think makes them inherently essential to an understanding of the human mind and the neurotypical experience. As we've come back to time and time again during the course, understanding how a neurologically atypical brain works highlights the functioning of the brain in general, so that we can better learn how a neurotypical brain crafts and contributes to our experiences. In our readings about autistic spectrum disorders, we've had the perspectives of the neurotypical (Clara Claiborne-Park, Lisa Capps and Molly Losh, and our friend Oliver Sacks, in both An Anthropologist on Mars and his introduction to Exiting Nirvana), the autistic (Temple Grandin), the Asperger's (Tim Page), and the neurotypical writing as autistic (The Curious Incident of the Dog in the Nighttime), and this synthesis, this meeting different aspects of similar experiences, even more than the experiences themselves, is where we can really find an understanding of the material. The relationship between a neurotypical brain and an autistic one could be seen as this idea, written in synapses and chemicals rather than in words.