Decloaking Disability: Images of Disability and Technology in Science Fiction Media



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Decloaking Disability:

Images of Disability and Technology in Science Fiction Media
by
Alicia “Kestrell” Verlager
B.A. English

University of Massachusetts, Boston, 2004

SUBMITTED TO THE DEPARTMENT OF COMPARATIVE MEDIA STUDIES IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE IN COMPARATIVE MEDIA STUDIES

AT THE


MASSACHUSETTS INSTITUTE OF TECHNOLOGY
AUGUST 2006
©2006 Alicia “Kestrell” Verlager. All rights reserved.
The author hereby grants to MIT permission to reproduce and to distribute publicly paper and electronic copies of this thesis document in whole or in part in any medium now known or hereafter created.

Signature of Author: ____________________________________________________________

Department of Comparative Media Studies

August 11, 2006

Certified by: ___________________________________________________________________

Henry Jenkins III

Peter de Florez Professor of Humanities
Professor of Literature and Comparative Media Studies
Accepted by: __________________________________________________________________

Henry Jenkins III

Peter de Florez Professor of Humanities
Professor of Literature and Comparative Media Studies
Decloaking Disability: Images of Disability and Technology in Science Fiction Media
by
Alicia “Kestrell Verlager
Submitted to the Department of Comparative Media Studies

on August 11, 2006 in Partial Fulfillment of the Requirements for the

Degree of Master of Science in Comparative Media Studies

ABSTRACT
This work examines how images of disability are used to frame cultural narratives regarding technology. As advances in biotechnology ensure that more people will be living with technological prosthetics against and beneath their skin, there is an increasing importance in examining how such bodies challenge traditional cultural attitudes regarding identity and non-normative bodies.
This work uses a cultural studies approach to explore the intersections between disability and technology. Additionally, memoir is often included to illustrate some of the complexities regarding how experiences with disability and technological prosthetics can influence aspects of identity.
Like disability, technology is often framed in gothic terms of lack or excess, and thus a discussion of the "techno-gothic" also features in this work. Furthermore, such a discussion is also relevant to seemingly unrelated modes of characterizing the other, such as the archetype of the cyborg, the queer body, or the formation of non-traditional social groups, even to images of the city as urban ruin.
This work demonstrates that, while images of disability rarely inform us about the everyday experience of disability, they can inform us about how technology frames non-normative bodies as either "less than" or "more than" human, and how the tropes and language associated with disability is often used to characterize technology itself.

Thesis Supervisor: Henry Jenkins III

Title: Peter de Florez Professor of Humanities, Professor of Literature and Comparative Media Studies

Table of Contents

Acknowledgements

Introduction: On the Stories We Tell About Disability and Technology

Thesis


Thesis Information

Introduction Notes



Chapter One: Subjectivity and the Disabled Body in Science Fiction

1.1 “One of Us”: The Intersections of Disability and Science Fiction Narratives

1.2 Freaks: Anomalous Versus Assimilated Bodies

1.3 The Golden Age of the Assimilated Body

1.4 Anticipating the Mind Meld: Communication as Communion with the Alien

1.5 Excursus: Sense and Subjectivity in John Varley’s “The Persistence of Vision”

1.6 The Cyborg Manifesto: Subjectivity in Science and SF After Varley

Chapter One Notes and Works Cited


Chapter Two: Miranda Jones and Me: The Prosthetic Aesthetic and the Techno-Gothic Body

2.1 Star Trek and the Constellation of Disability and Technology

2.2 What Lies Beneath: The Uncanniness of Disability and Technology

2.3 Communing With Caliban: Diversity and the Problem of Recognition

Chapter Two Notes and Works Cited

Chapter Three: Disability as Urban Ruin: The Techno-Gothic City as Body in Blade Runner

3.1 Hephaestus’s Left Foot: Limping Through the City

3.2 After the Fall: Evolutionary Anxieties and the Technologized Other

3.3 Recognizing the Skin Job

Chapter Three Notes and Works Cited
Conclusion

Acknowledgements
I would like to acknowledge my thesis committee members for all their encouragement:

Faye Ringel, Professor, Department of Humanities, U.S. Coast Guard Academy; Henry Jenkins, Professor, Comparative Media Studies, MIT; and William Uricchio, Professor, Comparative Media Studies, MIT.


I would also like to thank the science fiction writers and readers who answered my many questions and who offered their own recommendations of works I should read.
Last, but not least, I wish to thank Alexx for his encouragement and proofreading, not to mention the comics.

Introduction: On the Stories We Tell About Disability and Technology
Decloaking Disability examines the practice of using media images of disability to frame cultural discourses regarding technology, both in fictional and nonfictional narratives. While narratives concerned with disability and technology often use terms such as “special” or “assistive” technologies to create the impression that the technologies people with disabilities use exist separate and apart from mainstream technologies, and that such special technologies are distinguished from those of the mainstream by being imbued with values of overcoming, compensating for, or even curing non-normative bodies, such distinctions can be viewed as arbitrary and artificial. Such narratives, while they may explicitly “celebrate” the fact that these special technologies allow people with disabilities (PWD) to “lead normal lives,” often simultaneously serve to stigmatize the technologies used by PWD as extraordinary technologies subordinate to mainstream technologies, much as disabled bodies are often constructed as subordinate to “normal” bodies. Such narratives typically ignore the role of people with disabilities as early adopters and adapters in the development of new technologies. In addition, I suggest that such images frequently use disabled bodies to manifest points of social tension and contention regarding cultural attitudes toward technology and identity.
One of the main difficulties in discussing any aspect of disability is the speed with which such discussions are dismissed as being irrelevant or insignificant to the main able-bodied society. Yet disability is used to frame many of the norms and values of the able-bodied society, and this includes the uses to which the society puts its technology. Genetic counseling, stem-cell research, invasions of the biological body like prosthetics and implants: each of these explosive topics illustrates how discussions of new technologies intersect with representations of disability. Furthermore, media representations of people with disabilities are often framed specifically to rouse either support for or resistance to radical new technologies.
Adding even more layers of meaning to these images is the fact that such representations may not even be addressing the subject of technology, but instead may frame some less explicitly stated theme, for, in my experience, disability stories are rarely solely about disability. Images of disability are often appropriated to express the attitudes and agendas of social institutions and practices such as family, education, citizenship, and gender and sexuality. Thus, images of disability and technology frequently carry a message for the non-disabled even more than for the disabled audience. One example of such appropriations is the widespread use of images of Helen Keller to make statements regarding the role of reading or education in society. Such statements rarely address the difficulty of finding sufficient numbers of teachers for blind students to learn braille, or to ensure that disabled students have the same access to educational materials as their non-disabled classmates. Instead, the purpose of such images is to convey cultural attitudes regarding the value of reading for the able-bodied “normal” students in the society. Another example of how implicit meanings can be conveyed in images of disability is the cultural assumption that technology promises to “fix” disabled bodies by making them conform to cultural norms. Such representations often use the language of illness and cure to say as much about non-conforming but able bodies—such as the queer or homosexual body—as the disabled body. One need only look at the language of the heterosexual mainstream that frames homosexuality as a condition which could and/or should be “cured” by medical technology to comprehend how the subject of disability leaks into other aspects of identity politics. Both of these examples demonstrate why other minority groups that fall under the label of “diversity” have sought in the past to distance or disassociate themselves altogether from disability. Thus, the ways in which images of disability intersect with technology have rarely been critically examined or even commented upon by either the mainstream or minority groups, despite the fact that these media images do not restrict their influence merely to technologies for people with disabilities but ultimately provide insight into cultural values and beliefs regarding technologies for the culture at large.

The title of this thesis comes from a science fiction technology: the Star Trek cloaking device that renders objects invisible by “cloaking,” that is, making the object undetectable to the human or technological eye. “Decloaking” is that transformation in reverse, that is, rendering a “cloaked” or invisible object visible. I will be applying this process of decloaking themes in cultural images of disability by using science fiction as a framework for interrogating cultural assumptions about disability in narrative. Science fiction narratives, like science and technology innovation itself, have often reflected the fact that people with disabilities are frequently early adopters and adapters of technology. Additionally, science fiction has often used protagonists with disabilities to illuminate the tension between cultural and personal motivations for using new technologies. In this way, technology itself often serves to lend material form to the abstraction of teleology (that is, the study of final causes, purposes, or goals) in the adoption of technology, such as the ways in which technology may impose its own design upon the body through prosthetics or architectural spaces. The larger part of my analysis will concern itself with how such teleologies are expressed in stories through themes that frame technology as a control system which enacts a point of assimilation or resistance to cultural norms concerning cognition or behavior. My analysis will also concern itself with how such disability themes often offer alternative representations of what is human that challenge the traditional dualistic perspective such as mind/body, normative/other, presence/virtuality—binary oppositions that stigmatize those individuals who fall into the negatively-valued characteristic.


Narratives about disability and technology can thus often express the tension between identity politics and the experience of social pressures to conform to cultural norms. It is this tension between personal identity and cultural coercion that I will explore in this work. What I hope to demonstrate is that technology is both personal and political, not only for people with disabilities, but for anyone who inhabits an increasingly technological environment. Thus, I wish to open with one of my own stories that I hope will illustrate some of the complexities between the personal and political aspects of disability and technology.
On the Saturday morning before I was to present the proposal for this thesis, I was standing on a train platform in Boston, waiting for the train that would take me to MIT, where I was attending a conference on media and narrative. A man walked up to me and said, “HI!”
Since I am completely blind and it is difficult for me to recognize a voice with only a single syllable to go on, I wasn’t sure if I knew him, but his tone implied he knew me, and his voice sounded similar to that of a friend who lives near the train station, so I thought it might be my friend. I tentatively replied, “Hello.”
This man, who it turned out I had never met before, began to ask me what I think of as “the interview questions.” These are the questions that people with disabilities get asked constantly, and by people they’ve never met before. “How blind are you?” “How did you go blind?” “When did you become blind?” This man fired them all off, despite my obvious pauses and short answers. I always feel conflicting motivations when I am in this situation: on one hand, I feel reluctant to share the private and personal details of my life, particularly since so often doctors, teachers, and total strangers seem to expect that I should feel no qualms at all regarding answering any question they might feel entitled to ask me; on the other hand, I keep hoping that by answering with a semblance of cooperation and humor I might actually impart some sort of knowledge or at least increased awareness to those asking the questions.

What this man really wanted to do, however, was impart knowledge to me. “I have a friend who’s blind,” he began, “and he read a news story about how they’re developing a computer chip that will let blind people see. My friend is waiting to get this chip in his head.”


While the stranger’s comments caused me to suppress a groan, the topic of his story and the way he told it were part of a narrative familiar to any person with a disability. One of the social effects of having a disability is that people who don’t know you come up to you in public and at parties and try to persuade you that you should get radical new surgeries, medications, or implants that they have read or heard about so that you can be cured. Indeed, these stories represent an ongoing cultural narrative that people with disabilities should not only desire such dubious cures, but should also feel a social obligation to actively pursue technologies that promise a cure in order to align themselves with the rest of the society, that is, allow their bodies and minds to be assimilated.
It is the unspoken theme of assimilation that makes me think of such technology proselytizers as the man who approached me on the train platform as “the Borg”—those cyborg characters in the Star Trek series who travel the universe, seeking out new life forms, in order to confront them with the ultimatum “Resistance is futile; prepare to be assimilated.” While the word “diversity” has become a motto for celebrating religious, racial, ethnic, or other forms of human variation, it is a word rarely applied to physical or cognitive variation. If technology is going to be used as a means of eliminating such variation, it should be challenged, while cultural narratives and media images that convey such themes of assimilation should be interrogated and exposed as the means by which such ideologies are preached, for assimilation through technology is at the heart of this cultural narrative, a narrative that has never perceived itself as a form of social coercion.

One way in which such cultural narratives of conformity and cure fail is that they rarely offer critical information that allows individuals to make robust, informed choices about the technology. I have read many of the stories the man referred to [1], and I have even talked with other blind people who get excited about these stories, but I myself always feel a sense of reservation. My reservations do not arise from a fear that I will get such a chip inserted in my brain and that I will subsequently become a cyborg. As someone who has multiple prosthetics who also spends most of her waking time reading and writing on her computers, I already self-identify as “cyborg.” No, what disturbs me about these stories is the absolute lack of any sort of critical dialogue within or around them. What I mean by a lack of critical dialogue is all the things that go unsaid and unmentioned in order to make the story conform to traditional tropes of “tragedy” or “triumph.” Some of the details I would like to know represent social and economic factors that complicate the essentializing narratives. Some of these questions are:

* Economics: How much do these surgeries and implants cost? (The average I’ve heard regarding the cochlear implants and the visual implants is over fifty thousand dollars.)

* The validity of the study and the test subjects: Often one reads different stories that mention the same test subject by name over and over. I can’t help but feel that after a period of time—and many of these subjects have been involved in these experiments for years—being asked the same questions, the test subjects couldn’t help but begin responding to those questions with the expected answer. Aside from the question of possible confabulation, I am concerned that these experiments are located in Europe, and have yet to receive FDA approval.

* Extent of time spent with implant in real-world environments: These subjects have not lived 24/7 with the implant, but only short durations, and no mention is ever made of whether the subjects live outside the research facility with the implant.

In many ways, these narratives of technological cure reflect poor journalistic practices on the part of the mass media which, rather than asking hard questions about disability and technology, chooses instead to become complicit in perpetuating old stereotypes by framing disability as requiring cure or fixing, and framing people with disabilities as objects of tragedy or overcoming. The upbeat human interest story—what I refer to as “the triumph of the human spirit” story—rarely does justice to the complexity of social and personal conditions, including the medical history of the individual, which lie outside the realm of simple uniform answers. Yet such stories are taken at face value with very little critical discourse, and, as in my own experience of trying to introduce such critical discourse into my conversation with the stranger on the train platform, the conversation devolves into a “he said/she said” set of responses. It seems to me that the stranger and I represented two very different discourses: his, which resembles an urban legend discourse, where the “friend of a friend” word-of-mouth is accepted as valid evidence, versus mine, which is built around a demand for proven facts and demonstrated results. I have come to think of these two discourses as the theologic versus the logic discourse, the former being based on a cultural discourse of belief, with its own particular practices of narrative and evidence, as opposed to the latter, which relies on examining the validity of information through inference and demonstration.

In my conversation with the stranger on the train platform, all of these thoughts and struggles over contested meanings occurred beneath the surface, however. I can only try to persuade such an audience that I am familiar with the stories being told and that I am resistant to the simplistic “happy ending” structure of such stories.
When I tried to voice some of my thoughts on the subject to the stranger on the train platform by stating that I was familiar with those stories and that I felt serious questions had not been addressed, the man on the train platform answered readily, “But my friend said he would be able to read signs and stuff so he could get around easier.” While personally I wondered which alternate Boston the man lived in where there were signs for even the sighted people to read, I replied, “But I can teach myself to get around without reading the signs. The resolution from the implant wouldn’t be enough for me to read books either.”
The man was undeterred by this argument. “My friend thinks it would let him read books.”

I decided to bring out the big guns. “I’m a graduate student at MIT; I’m actually pretty happy with my brain the way it is.”


But no, this stranger would not be persuaded that I knew at least as much about the technology, let alone my own abilities and desires, as he did. He could not seem to understand that I was happy with my life and my successes—and my chipless head—as they were; instead he seemed to feel that having a piece of technology implanted in my brain would, could, only improve my life. He continued on and on, until I began to feel an odd sense of being pressured into something I had no desire to do.
It was ridiculous, of course. This man was a stranger with no influence or control over my decisions.
Yet he was representative of a very real social pressure to use technology to conform to cultural norms. Such pressure can be applied generally through such casual interactions as mine with a stranger, but is often applied more powerfully through the personal—that is, family, friends, and institutional relationships.

My friends and extended family know my thoughts on such matters and respect my opinion enough that they listen to my arguments and accept them, but what about the friends and family of other people with disabilities? What about the doctors, teachers, counselors, and the extended social groups to which other PWD belong? This is the very real situation facing many deaf people in relation to cochlear implants [2]. This is the very real situation facing many people with speech impairments who are asked why they don’t get voiceboxes that produce synthesized speech (see, for instance, the documentary King Gimp [3], in which art student Dan Keplinger addresses this subject).

If I, as someone who is old enough to make my own decisions and experienced enough with technology to have some inkling of which questions should be asked, if I am educated in regard to media in a way that allows me to even interrogate the news story, if I could feel pressured, how would such relentless arguments affect other PWD without this knowledge and experience?
Most of these stories are neither strictly technology stories nor disability stories. Such stories instead represent a chimera, a strange animal engineered from a variety of metaphors, meanings, and motivations. In these stories, disability becomes a trope, a characteristic, and a “symbolic vehicle for meaning-making and cultural critique” (Mitchell and Snyder 2000, 1). The lonely and violent monster of Mary Shelley’s Frankenstein and the virtuous but pitiable crippled child of Charles Dickens’s A Christmas Carol have become recognizable character types that spill from fictional narratives into nonfictional stories we tell about disability. Real stories of disability as a lived experience cannot be reduced to either a case study or a fictionalized story that can be told within the span of a few hundred pages or two hours spent in a movie theatre. Such narratives are deterministic because they must be resolved within the span of a few pages or a few minutes on screen, flattening the disabled character to the two-dimensionality of a page or a frame, and thus reduce human identity to a type, that is, a particular point of view and positioning in which the character’s motivations are an extension of the author’s motivations in telling the story. This is reflected in my meeting with the stranger on the platform who wanted me to adopt his story as my story, that is, to accept his own view as the correct one.
Such stories seem to indicate a certain unwillingness, or even inability, on the part of both writers an audiences to distinguish between facts and their—not my—wish-fulfillment fantasy. How else to explain the non-critical blatant sentimentality of disability stories in the news? How to explain why trained news journalists seem to abandon all sense of objective truth and basic methods of investigation when they cover such stories? Why do audiences so often seem to fail to apply critical questions to interpreting these stories? Most of all, why do such stories so often exclude personal identity as an aspect of making reasoned choices about technology?

It could well be that what I am referring to as a lack of critical discourse may be an example of an alternate discourse, one based upon belief rather than science. Authors who have written about the tension between science and spirituality include Daniel Dennett (Breaking the Spell: Religion as a Natural Phenomenon) and Lewis Wolpert (Six Impossible Things Before Breakfast: The Evolutionary Origins of Belief ). Such tensions have a lot to do with factors such as who each of us individually accepts as a credible expert, to what extent we choose to allow others to influence our personal choices, and what degree of curiosity and research skills we possess that allow us to find the information we need to make those choices. The tension between discourses of science and discourses of spirituality is not, however, limited to fictional or human interest stories. Scientific writers such as Oliver Sacks also offer problematical perspectives on disability and technology. Sacks, who is a trained neurologist, has written a number of books and a large quantity of articles which have been widely read. Sacks often writes each article as a case study about a particular individual with a disability that affects how that person perceives and interacts with the world, and, again and again, these stories return to the theme of communication as a mode of social isolation versus social integration to frame the individual’s life as either happy or lonely. Yet this anxiety regarding isolation and loneliness is also an aspect of the literary Romanticism which Sacks himself often lays claim to as an aspect of his own perspective and that of other doctor-authors whom he admires (for an example, refer to Sacks’s annotated bibliography of An Anthropologist On Mars, where Sacks’s own authorial antecedents such as A. R. Luria in his autobiography The Making of Mind link disability with Romanticism of the author’s intellectual development and the narrative mode of the case study as “Romantic Science” [Sacks 1996, 297]).


In his referencing of science as the Romantic, Sacks conflates the identity of the doctor with that of his patient. Disability studies scholars Leslie Fiedler and Paul Youngquist have both addressed this conflation of the identities of doctor and patient. Youngquist writes that medicine, which emerged at the same historical moment as the Romantic movement in Britain, helped shape the idea of the normative body, but it could only do this by paradoxically defining the anomalous body and then subsequently attempting to assimilate it.
…the material force of a norm of embodiment…seeks an exception to prove its rule. It assimilates as it pathologizes, assimilates in a weird way because it pathologizes. (Youngquist 2003, xiv)
The emergence of the medical “theatre,” however, also aligned medicine with the dramatic possibilities of media images, and many of these images required that the materiality of the physical body be encoded with the norms of nineteenth-century democracy, with its resultant institutions and practices, including the literary movement of social realism. Medicine, media, and social institutions and practices evolved simultaneously, and they all used images of bodies “marked” by non-normative characteristics to define the normative or “unmarked” body. Thus the defining characteristic of the normative body became its invisibility within the context of society and the public sphere, while simultaneously heading off any challenge to this image by maintaining that the body itself was unimportant and “immaterial.”
Many of these Romantic images of the non-normative body paint in broad strokes which provide a portrait of the disabled body as simultaneously “less than” and “more than” human. Leslie Fiedler examines how John Merrick, the Elephant Man, for instance, was promoted as a wonder, a spectacle, and an example of how a gentle soul could exist within the prison of a monstrous body. These images were created by Dr. Frederick Treves, the disabled man’s doctor, in the doctor’s, not Merrick’s, autobiography [4]. Such a conflation of autobiography and biography was also constructed in the writings of Anne Sullivan about her famous student, Helen Keller [5]. (Note that the most famous book and movie about Sullivan and Keller, written by William Gibson [no relation to William Gibson, the cyberpunk author] is titled The Miracle Worker, referring to Sullivan, not Keller, as the protagonist of the story [6]). Once one asks, “Who is the storyteller, and what are his motives for telling the story?” one begins to get an inkling of why such narratives of disability are more likely to reaffirm traditional binaries of mind/body and corporeality/spirituality, rather than challenge such oppositions, for such storytellers are often aligned with social institutions and practices, such as medicine or education, that have very different motivations and models for socializing individuals than that of identity politics.
These storytelling tropes, however, though originally seen in media images of the Victorian era, remain every bit as popular in current media images. Returning to Oliver Sacks as a storyteller who produces medical and media narratives, we can read how he follows this Romantic paradox of framing disabled bodies as anomalous and then assimilating them into society, while his own body and its identity remain unmarked and unremarked upon. Yet this separation of the storyteller from the story is problematical. Sacks has written and stated in interviews [7] that he himself often finds social relationships difficult, that he does not date, and that he has chosen to remain celibate. If one were to read the narratives of disability that Sacks-as-storyteller writes as a personal narrative about his own difficulties with social relationships, these stories say less about disability than they say about the storyteller and how powerfully he conveys cultural anxieties regarding feelings of emotional loneliness and the experience of social isolation. However, Sacks’s use of his preoccupation with people with disabilities as the foundation for his professional career has led many disability advocates to compare him to P. T. Barnum, whose own professional career (and its subsequent monetary profit) was based to a large degree upon his employment of PWD as “freaks.” Disability scholar Tom Shakespeare, in his review of Sacks’s An Anthropologist On Mars, referred to Sacks as “the man who mistook his patients for a literary career” [8]. This criticism of Sacks often strikes non-disabled readers as over-harsh, but, in his own framing of his role as an anthropologist of PWD, Sacks seems as problematical to many disabled people as cultural studies now finds the ethnographic narratives of those anthropologists who studied indigenous people in the twentieth century.
Note also the science fiction aspect to the title of Sacks’s book, which frames the disabled people he writes about as “aliens” from a different planet. One issue in the dynamic of the expert who appoints himself as the official storyteller of the experience of disability is that both the professional and financial success of the storyteller often rely upon his framing of the disabled characters as extraordinary, freakish, or abnormal. This is what disability studies scholars and disability advocates term the “medicalization of disability” (Linton 1998, 1-2).
Medical humanities programs, such as that at NYU’s School of Medicine [9], are only just beginning to address how medical science creates its own non-neutral narratives about disability. These programs attempt to make explicit how medical frameworks may reaffirm stereotypes by making implicit assumptions, even when such assumptions do not portray disability as negatively-valued—at least, not obviously so.
In turn, media producers such as journalists and visual artists, who quote the “experts,” adopt the same point of view and metaphors used by the doctors, never examining the binaries—sick/healthy, broken/fixed, anomalous/assimilated—used by the medical professionals. Such textual and visual images are in turn adopted by the institutions and practices that address the social needs of people with disabilities.
The overlap between Oliver Sacks’s medical and commercial careers highlights how the separation between the professional medical narrative and the popular case study has always been a contested one. In one article published in the August 2003 edition of The New Yorker [10], Sacks repeatedly swings back and forth between the language of science and the language of Romanticism. Sacks begins this article by discussing blindness in terms of the “brain-mind problem” as it relates to choice, self-determination, and adaption by discussing the case of John Hull [11], a professor of religion who went blind as an adult.
[T]o what extent are we—our experiences, our reactions—shaped, predetermined, by our brains, and to what extent do we shape our own brains? Does the mind run the brain or the brain the mind—or, rather, to what extent does one run the other? To what extent are we the authors, the creators, of our own experiences? The effects of a profound perceptual deprivation such as blindness can cast an unexpected light on this. To become blind, especially later in life, presents one with a huge, potentially overwhelming challenge: to find a new way of living, of ordering one’s world, when the old way has been destroyed (Sacks 2003, WBS).
Soon, however, Sacks makes a point of describing how Hull “sees” objects most clearly when it is raining, because he can hear the shape of the objects by the way the rain falls over them. Such descriptions make some use of synesthesia, or the way in which the sensory input of one sense is translated into the experience of a different sense (as in “hearing” music as colors). Yet, as I read the description, I couldn’t help but think of the moment in the Daredevil movie where the title character, a blind superhero, “sees” the woman he loves when she is standing in the rain.
One question which might be asked regarding such textual and visual descriptions is why they choose to frame the skills and abilities of PWD as extraordinary rather than ordinary by using images and language that frame such skills and abilities as uncanny powers rather than commonsense knowledge. There have been a number of very interesting studies done, using blind people as subjects, that have used FMRI to investigate how the brain activity of blind individuals may vary from that of sighted people [12]. There have been other studies that have had sighted people living blindfolded for extensive periods of time to investigate brain plasticity in order to find out how their brain activity might remap itself to adapt to the loss of sight [13]. These are only some of the research studies that have implications for developing computer vision and the field of neuroscience [14]. Yet Sacks, like so many other media producers, while he makes cognition the supposed subject of his narrative, couches the topic of human thinking in Romantic language that places spirituality over materiality, the compensation of “gifts” over the adaptation through knowledge, “an uncanny otherness” over a sense of common “us-ness.” In other words, the practical and pragmatic considerations of being ordinary and living in the everyday world are not the primary themes of this sort of discourse of disability. Instead, narratives such as Sacks’s are driven by the need to construct disability as extraordinary. Sacks himself is often confused by his failure to locate the “typical” experience of blindness. He goes on in his article to discuss how, after the publication of his original essay on Hull, he received many letters from other blind people who disagreed with Sacks’s conclusions regarding the experience of blindness.
Had I been wrong, or at least one-sided, in accepting Hull’s experience as a typical response to blindness? Had I been guilty of emphasizing one mode of response too strongly, oblivious to the possibilities of radically different responses? (Sacks 2003, WBS).
I believe that Sacks’s confusion regarding his own failure to depict the “typical” experience of blindness is a key to the reason for the popularity of disability themes in both mainstream and science fiction narratives, though the motivations and themes of both modes of storytelling are quite different from one another. In mainstream narratives, disability is used to frame the “normal” experience by defining the limits to that experience, with the image of the “freak” often used as the marker of that boundary. The inherent problem in such models of normativity is that they fall apart when framed by alternative discourses, such as those of science fiction, which demonstrate that such models, rather than expressing objectivity, express the limitations of particular positionings, the definitions of a specific historical or cultural moment, or even the anxieties and wishes of the narrative’s creator. While mainstream narratives are preoccupied with images of the strange and uncanny in order to reaffirm the normative experience, along with all the social institutions and practices connected with it, science fiction just as often challenges such constructions. Science fiction grew up alongside science and technology because science and technology have become the modes by which the mainstream constructs the “other,” with the mainstream insisting that certain human variations are “unnatural” and thus are justifications for literally failing to recognize fellow beings.
With culture’s increasing use of technology—and this includes biotechnology—there is an equivalent increased need to examine the ethics used to make social and personal choices about such technologies. The construction of dualities to create a sense of there being two distinct groups of technologies can only result in both a mistaken sense that such distinctions are valid, and a less robust basis for making useful technological choices.
If we as readers, viewers, and consumers cannot rely upon “experts” such as journalists, psychologists, and bioethicists to suggest paradigms for critical discourse with which to interrogate narratives of physical and cognitive differences, where are we to find such a critical discourse? How are we to learn which questions to ask in order to distinguish between critical and non-critical discourses of disability? Most importantly, how are we to learn how to make well-reasoned beneficial choices in the present or future case of personal disability?



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