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.
2 comments:
Interesting that you should mention Ripley's. I watch the show version on the Sci-Fi channel, and when there are people featured, I always relish the chance to stare at human oddities without having to worry if the person will see me looking at them, and be offended. Obviously, it's rude to stare at people who are deformed, or act in an unusual way. Yet I always wonder whether we force ourselves to look away because of concern for the person's feelings, or because we feel the need to deny our curiosity, which is just another "sinful" but natural human feeling, like lust or anger.
When I think about what Sacks' "neuro-porn," as you put it (very nice!), I think about what it must be like to be one of those people. How do they feel about the fact that they have, essentially, given people permission to stare at them? What does this tell us about the nature of human "oddities" and our natural curiosity? Surely we shouldn't stare at anyone "rudely." I'm sure many people with disabilities get rude or even menacing looks. But I wonder whether it would be better for all involved if we were able to express our curiosity without feeling guilty - stare without feeling that we have crossed some social barrier, etc.
Sacks' books seem to be the perfect venue for this. We don't interfere with his patients' daily lives - for example, we don't go up to them on the street and ask, "Why are you like this? Why do you do that?" but we still learn the answers to those questions. The people with brain injuries and other conditions have the chance to answer those questions - which seems to be satisfying for both parties.
I think the most valuable thing we can take away from Sacks is an understanding of a variety of different ways of "being" or existing. If we can accept that people who are autistic are not strange or "abnormal," but rather represent a different point on a spectrum that we ourselves are on, we won't experience the shock - and the accompanying curiosity - when we see someone in public who is expressing autistic-like behavior. The only way to stop staring at "oddities" is to convince ourselves that they aren't oddities at all.
First off, neuro-porn = brilliant. Secondly, to agree with you and Madeline, I understand the morbid fascination with people who with brain damage and illnesses, wondrous humans on Ripley's and all that jazz. But I've come to my final conclusion on the subject. We, as humans, are curious in nature. We are nosy, we rubberneck on the highway during accidents and we eavesdrop on conversations involving people we don't know. It is innate to us, we have an ever-present hunger to learn and know everything, no matter what it is. We are interested in things we are not familiar with, become obsessed with things unlike ourselves--how could we not be captured by all the case studies we've read by Sacks or other neuropsychologists? And sometimes like in Michelle's case (the wonderful woman who came with Lyde to speak to us) we might find that we have more in common with our fascination than we think. If it was not for curiosity, where would we be? It drives the world toward progression. We would know nothing of science or how to cure some diseases, meeting people would be a total bore and learning history wouldn't even exist. Curiosity makes us almost as much as our synapses do! So that is why I've chosen NOT to interpret any of this as exploitation anymore. We are just getting the option of being better informed--what would reading or watching the News be then?
I also sort of have a bone to pick with LeDoux on the last two chapters of the "Synaptic Self". I love the last two lines, "You are your synapses. They are who you are." I feel like that is the perfect way to sum up everything we have been reading and learning. But in the paragraph before, I feel like he almost contradicts this point. He says, "When thoughts are radically dissociated from emotions and motivations, as in schizophrenia, personality can, in fact, change drastically. When emotions run wild, as in anxiety disorders, or depression, a person is no longer the person he or she was. And when motivations are subjugated by drug addiction, the emotional and intellectual aspects of life suffer." Now, I agree that a person can suffer emotionally and intellectually when challenged by a disease or ailment of any sort. But I sensed a sort of negative tone to the sentences about schizophrenia and anxiety disorders... Change is inevitable, for every person, no matter what the circumstance is. That doesn't dictate the nature of change, no one can predict whether it will be bad or good, but then again, who says being changed from an illness is automatically bad? Floyd Skloot proved to be a great person post-brain infection; a person his wife enjoys more. How can LeDoux say, "...a person is no longer the person he or she once was." and proceed to say "You are your synapses. They are who you are."? The synaptic change makes the physical, emotional and mental change. We would change regardless of external variables; I am no longer what I once was in Middle School or High School. I will always change, that's what life is. People suffering from anxiety disorder, let's say, can't just be seen as a new person. He or she is just dealing with a new chapter in life and is managing differently, personality-wise. I feel like we've been battling against this stigma that a disease makes someone a different person, and he suddenly reinstates it in the end before he leaves us off with a few uplifting words. Anyone else agree?
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