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SOBRE A DEFICIÊNCIA VISUAL


A Rehabilitationist's Notebook: Oliver Sacks on Blindness

by Anthony R. Candela

Self-Portrait During the Eye Disease II - Edvard Munch, 1930
Self-Portrait During the Eye Disease II - Edvard Munch, 1930


The July 28, 2003, issue of the New Yorker magazine featured an article by famed clinical neurologist Oliver Sacks, in which he continues his lifelong quest to understand brain, mind, and the total human experience by tackling the latest phenomenon to capture his interest: how people who lose their sight in adulthood see the world. I believe Sacks's attempt to explain something fundamental about human functioning from the experiences of only a few blind people is scientifically misguided and may have deepened certain stereotypes about blindness held by the general public.

Sacks became interested in how blind people who once possessed eyesight now perceive visual images. If they still conjure up these images in their heads, what accounts for this ability? What do we make of documented differences between blind people in their ability both to retain images from when they could see and to create new images from present-day experiences? In short, Sacks wonders what happens inside the brains and minds of blind people that enables and indeed inspires these images and what this can tell us about how the human brain works in general.

Skilled as he is in clinical neurology, Sacks in his attempt to make sense of disparate reports from blind people is hampered by his failure to include not only psychological and social factors but even some physiological elements necessary to fully understand the experience of the blind people he studied. With a faulty foundation, it is not surprising he had difficulty making sense of what he heard. More important, we must ask what ideas about blind people the sighted readership take away from the article.

I have been visually impaired since birth and blind since middle adulthood. As someone who also has worked with blind people his entire career, I understand that blindness cuts across all strata of the human condition ̶ including all manner of mental capability. As a professional rehabilitation counselor trained in the social sciences, I favor methods of inquiry about the human condition that incorporate both a close understanding of people's individual circumstances and a broad-based perspective on large groups of people with similar concerns.

As a medical scientist, Sacks misses some of these nuances because he approaches his inquiry into the human experience through case-by-case analysis. His goal is to uncover the physiological foundation of mental experience. The medical case study, a technique used by physicians for centuries, is a modality we social scientists have come both to cherish and to mistrust. It is easy to analyze a few people in detail and think you have uncovered all the secrets of people in the category in which you are interested. In the New Yorker article, for example, Sacks employs information from only five blind people in his exploration of human mental imagery.

Most of us have heard of Oliver W. Sacks. He is a clinical neurologist whose most famous books include The Man Who Mistook His Wife for a Hat and Other Clinical Tales, Awakenings, An Anthropologist on Mars: Seven Paradoxical Tales, and Seeing Voices: A Journey into the World of the Deaf. Sacks recounts his personal circumstances in two books: A Leg to Stand On (musings while recovering from a broken leg) and Uncle Tungsten: Memories of a Chemical Boyhood (a delightful look into how Sacks's uncle got him interested in chemistry and the scientific approach to knowledge). Here we learn that the young Oliver, growing up in England during the blitz of World War II, was fascinated with physical phenomena from an early age. The fact that his mother was a surgeon no doubt also contributed to his scientific curiosity.

Sacks's style is gripping and enlightening, even if not always scientifically rigorous. He uses the case-study method to delve deeply into the experiences of patients and people struggling to function amidst often peculiar and unfathomable handicaps. For example, Sacks explains with pathos (the human experience deserves no less) what it is like for people to awaken from a coma after being "asleep" for years; trying to climb out of bed with a leg amputated while feeling that it is still attached to one's body; grabbing one's spouse by the head because of mistaking her for a hat; hearing music all the time, even when none is playing; and other similarly unusual experiences.

Sacks has actually come close to writing a book on functional vision. His 1997 book, The Island of the Colorblind, tells the story of how Sacks traveled to a few islands in sun-drenched and glary Micronesia, where there live pockets of achromotopes, people who, through geographic isolation and genetic inbreeding, are unable to perceive color. Sacks comes to understand that the problems of the achromotopes extend beyond their color-blindness. Extreme photophobia and poor visual acuity complicate their lives. To ease their pain (literally), Sacks and his colleagues provide the inhabitants with wrap-around sunglasses and other corrective optics.

Sacks's scientific and medical roots compel him to look at the world from a positivist perspective, believing that we shouldn't waste our time trying to figure out things that cannot be truly known (that is, reduced to basic rules). This means that Sacks's sincerity when he tells the world that not everything about the human condition has an explanation is tainted by his own deep-seated desire to provide one. When he cannot, he generally moves on to another line of inquiry.

What frightens me is Sacks's fixation on explaining human existential experience through brain function, while at the same time assuring us that he would never cheapen the human experience by reducing it solely to that level. I contend that, as convincing as these words may be, Sacks will not rest easy until he finds universal truths in the neuronal strata of the brain about how we function. Now that blind people have fallen into Sacks's sphere of interest, we may have a public relations problem.

In the New Yorker article entitled "A Neurologist's Notebook, The Mind's Eye: What Blind Men See," Sacks focuses on a thorough and soul-baring exploration of how one blind man's ability to form visual images in his mind vastly differs from that of another whose capacity for mental imagery is extraordinary. John Hull, a British professor of religious education who slowly lost his eyesight until finally becoming totally blind at age forty-eight, reported that he retained no ability to picture things in his mind. In contrast, Zoltan Torey, an Australian psychologist who has not only been blind since age twenty-one but an expert on the brain-mind problem, developed his ability to visualize the world to such a degree that he can picture complicated internal machine designs and indeed the convoluted, multilayered structure of the human brain itself.

Sacks explains recent research into the plasticity of human brain functioning. He informs us that studies of the brains of adventitiously deaf or blind people (people who lost their hearing or vision after developing their auditory or visual brain centers) show that the brain has the amazing capacity to reorganize itself. Functions can be re-allocated so that visual processing activity shows up in the auditory cortex of deaf people, and auditory processing activity can be seen taking place in the visual cortex of blind people. Moreover, documented differences exist among people in their preferred way to acquire information about objects and concepts. For example, some blind people are more innately visual but have developed their auditory and other sensory skills to a greater degree than they might have had their vision not deteriorated. Other people are more auditory and, because their vision is good (and as we know, sometimes not so good), never fully develop their auditory, tactual, and other perceptual skills.

Sacks explains that our ability to visualize comes from the brain's capacity to intermix its own functional abilities: "There is increasing evidence from neuroscience for the extraordinarily rich interconnectedness and interactions of the sensory areas of the brain. The result is increasing difficulty in saying that anything is purely visual or purely auditory or purely anything."

He concludes: "The world of the blind, of the blinded, it seems, can be especially rich in such in-between states--the intersensory, the metamodal--states for which we have no common language."

In the New Yorker article Sacks gives only passing attention to emotional and personality-related elements of human behavior. Take a common personality trait: extraversion. Sacks seems unaware that acquiring a working picture of one's environment takes a certain degree of social energy and outward orientation to ask numerous questions of sighted companions (as illustrated in this article by Arlene Gordon, a retired blind social worker). Moreover, personal reaction to one's physiological state contributes as much to how the brain reconstitutes itself as anything else. For example, if one were to become depressed over the loss of one's sight, he or she might withdraw, close off interest in the aggressive pursuit of the visual images that once came easily, and slowly lose or repress memory of those images.

Take this passage from the Sacks article about Jacques Lusseyran (a blind French resistance fighter in World War II):

A very short time after I went blind I forgot the faces of my mother and father and the faces of most of the people I loved. I stopped caring whether people were dark or fair, with blue eyes or green. I felt that sighted people spent too much time observing these empty things... I no longer even thought about them. People no longer seemed to possess them. Sometimes in my mind men and women appeared without heads or fingers.

Like Hull, Lusseyran simply stopped caring, perhaps withdrawing to an inner sensory world, and because his personality drove him to do so, he developed other ways of perceiving the world. In a passage from the Sacks article I will not include here, Lusseyran relates how he flabbergasted a friend as they walked together by telling him exactly what the landscape should look like. Lusseyran attributes this ability to the remaking of his inner world. His (and Sacks's) failure to include visual memory as a possible explanation illustrates the need for more thorough clinical interviewing before scientific statements can be made about the inner experiences of blind people.

Sacks continually appears awed when he encounters a mental phenomenon that cannot be explained by the sum of all the functional parts of the brain. It is indeed alluring to conceptualize the world in this way, and I think many people in Western society think so too. We tend to believe that everything should be explainable by some sort of unifying theory. That is what makes Sacks so riveting and, for us, the thing that provides a point of concern.

Skillful writers who publish in the popular media have the potential to convey both positive and negative images of blind people. In my opinion the New Yorker article did both. First, it drew the public's attention to blind people in a way that makes it clear that they are not all identical. On the downside it is hard to believe that the article did not also inject into the public mind a new level of occult mystery about what it's like to be blind. For example, most disturbing for our public image are discussions by Sacks of reports from blind people about conjured up, quasi-hallucinogenic visual images. It seems to me that dramatic reports about fantastic images reported by some blind people (perhaps with an artistic flair) do a disservice to the majority of us, who remain grounded in everyday reality.

Sacks begins this part of his discussion by saying that, when blind people can't see an actual visual image, they often conjure up their own image of what they think something might look like. True enough. However, usually they don't go overboard. Passages like the following from the article give the general public a sensationalized image of the inner mental life of blind people:

What happens when the visual cortex is no longer limited, or constrained, by any visual input? The simple answer is that, isolated from the outside, the visual cortex becomes hypersensitive to internal stimuli of all sorts: its own autonomous activity; signals from other brain areas--auditory, tactile, and verbal areas; and the thoughts and emotions of the blinded individual. Sometimes, as sight deteriorates, hallucinations occur--of geometrical patterns, or occasionally of silent, moving figures or scenes that appear and disappear spontaneously, without any relation to the contents of consciousness or intention or context.

Sacks gives the false impression that uncontrolled brain activity is the norm within the heads of blind people. He continues:

Something perhaps akin to this is described by Hull as occurring almost convulsively as he was losing the last of his sight. "About a year after I was registered blind--I began to have such strong images of what people's faces looked like that they were almost like hallucinations."

Sacks neglects to consider the role of literary license in his interpretation of Hull's experiences. He also fails to consider the role of native intelligence (memory, attention, mathematical ability, verbal fluency, etc.) in the mode of adaptation blind people choose to use. For example, a blind person who is extremely bright, has good analytical skills, and a steel-trap memory will retain and perhaps conjure up visual images differently from one who doesn't rely upon memory nearly as much and whose analytical style is different. Some people, for example, can take a few facts and build an accurate and intuitive image of the whole; others need a great deal more concrete information with which to deduce the picture in front of them. Thus, even comparing only two hypothetical people, it is easy to see that so many factors go into how someone perceives the world--with or without sight--that ultimately a Sacksian reductionistic explanation is impossible.

In the end Sacks (correctly) leaves us in the lurch. He announces that the phenomenon of sensory perception is too blurred for us to get a clean fix on it and that we cannot know for certain where the realms of sensation, perception, and imagination begin and end. As is his wont, Sacks defaults to the wonders of the mind, claiming that there is a hierarchy to how we process reality:

At this level one can no longer say of one's mental landscapes what is visual, what is auditory, what is image, what is language, what is intellectual, what is emotional--they are all fused together and imbued with our own individual perspectives and values.

Regarding Hull and Torrey, he concludes:

Even though the paths they have followed might seem irreconcilable, both men have "used" blindness (if one can employ such a term for processes which are deeply mysterious, and far below, or above, the level of consciousness and voluntary control) to release their own creative capacities and emotional selves, and both have achieved a rich and full realization of their own individual worlds.


CONCLUSIONS

It is probably a step in the right direction that a luminary as bright as Oliver Sacks decided to devote his intellectual and clinical powers to the blind. In his later years he seems to have defined himself as a champion of people with disabilities and a compassionate voice for those who cannot adequately describe their existences to the general public. Although to some extent Sacks's article has helped the public understand that blind people are not all the same, in certain important ways it may have increased the mystery in which we are viewed by those who do not know us well.

Empirical scientists and philosophers have used the blindness model as a vehicle to understand more about knowledge and human perception at least since Diderot's famous letter of 1749 ("Letter on the Blind for the Benefit of Those Who See"). In this letter Diderot popularized a long-standing philosophical question: if a blind person who has never been able to see learns the shape of a cube by touch and then has his sight restored, will he be able to identify the cube by sight?

Notwithstanding the chance that the answer to this question might shed light on human brain development and plasticity, the blind community needs to decide how it would like philosophers and scientists to employ the blindness model in their search for facts about human functioning. Blind people should insist that all physiological elements be part of the calculation. Experiential elements can also play a critical role. To illustrate these points: we all know people who will answer yes when asked if they are totally blind, or if they have always been that way. More careful questioning often reveals the presence of some light perception. Uncovering of primal memories often reveals a visual history temporarily forgotten by the blind person and conveniently ignored by those interested in finding model blind people for their studies of total sightlessness.

Sacks's literary prowess is potentially problematic. He is regarded as an authority, and, even when he himself tries to convey the idea that he doesn't always know, intelligent people take his word as gospel. The following passage from the preface of Andrew Potok's 2002 book, A Matter of Dignity: Changing the Lives of the Disabled shows how Sacks can sway even blind people about personal matters that are important to them:

A while back I sat at a friend's dining table across from Oliver Sacks... I told him that, after a twenty-five-year hiatus, I was painting again... He was polite and seemed happy that I was doing what I wanted to do, and then proceeded to tell us about . . . the color-blind of some tropical island, who were obviously in a very different category than a painter trying desperately, perhaps foolishly, to keep on painting... Tail between my legs, I went home to accept what was really going on ̶ painting might best be left to the sighted.

Because Oliver Sacks has been one of the most successful dispensers of scientific information to the general public over the past three decades, it would behoove the blind community to keep him in the loop on how we feel about what he writes. We should write to him and his publishers and tell them, not only our personal experiences, but how we feel his writings affect our public image.

As for the messages transmitted in the New Yorker, I hope its readership takes the advice Sacks received from Dennis Schulman (a blind clinical psychologist and psychoanalyst): "You are going to have to talk to dozens of people."

For our part we must remember that there is a critical difference between research that uses the phenomenon of sightlessness to tell us something about how all humans function and research designed to tell us something about how blind people themselves function. Often this latter form of research poses its own problems for us. We must be vigilant about the idea that sighted is best or about low expectations that underlie some of the research.

In any case we can rest easy in the knowledge that research of the type described by Sacks in the New Yorker will probably affect us less directly (albeit significant at the important level of public perception) than research on blindness itself. If I were to guess what will happen next, unless we contact him or unless MRI and PET scanning research turns up something new and significantly different, Oliver Sacks will soon move on to the next group of people who interest him ̶ people whose experiences give him hope of explaining yet another mysterious aspect of the human condition. Who knows whom he'll try to tackle next!

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From the Editor:
Tony Candela sent the following thoughtful article to the Braille Monitor two weeks after the publication of a long and interesting article by Oliver Sacks in the July 28, 2003, New Yorker magazine. Dr. Sacks is a fascinating writer with a lively curiosity. He is certainly not an expert on blindness or the experience of blind people, and Tony Candela's concerns and criticisms of his article seem well founded. Even without reading the original essay, thoughtful people should find what he has to say of interest.

Mr. Candela has worked as a rehabilitation counselor and employment specialist in the blindness field for more than twenty-five years. He has worked for the Commission for the Blind and Visually Handicapped and Lighthouse International in New York and is currently a national program associate in employment with the American Foundation for the Blind. He has a master's degree in rehabilitation counseling from Columbia University. Blind since birth, Mr. Candela has participated in wrestling, scuba diving, and long‑distance running. He lives in Berkeley, California.

 

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fonte:  https://www.nfb.org/

   


 

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20.Jun.2022
Maria José Alegre