We don’t tend to associate social media (or its study) with such a term. It tends to be words such as 'accessibility', 'transparency' and 'visibility' that frame our understanding. The 'dark web' is supposedly a foil precisely thanks to its murky impenetrability.
A number of scholars have begun to do the important work of picking apart the conceptual, legal and political implications of this rhetorical framing and it is something to which I will return. I want to begin, however, by talking about some of the more practical implications of this idea for the Ego Media project overall and for my thinking in particular. As discussed in the Methodologies essay, there are topics and areas of social media that will remain opaque to this project, for reasons that span the spectrum of the mundane to the extraordinary.
But some of the data produced by Ego Media will remain inaccessible only to readers—boxed up and locked away in a filing cabinet drawer or digital vault. There is data we will not share. This includes material withheld for ethical reasons—for example, the full transcripts of interviews with patients, which contain the sensitive data of individuals with stigmatised identities—as well as that withheld for legal or copyright reasons. (For more on this see: Methodologies, Interactions with Health-Related Information Online in People with Migraine and Epilepsy, Ethics & unshareable data and Life and War Writing, Off and Online.)
For a literary scholar this is an unusual (if not completely unknown) experience: writing about text that other readers cannot access for themselves. Granted there are the occasional frustrations around publishing on material not in the public domain, or decisions to be made around quoting from a scurrilous letter found in an archive. But for the most part we write on texts that our readers can access for themselves and draw their own conclusions about our characterisations and analysis of that text.1
Here, however, we have black-boxed that text and hidden it from view (opacity has become a question both of access and legibility). On balance, we think for good reason. Yet such a turn to opacity has important implications: methodological and ethical certainly—we should perhaps be talking about an ‘ethics of opacity’—but also conceptual and on a much broader scale than the single text. In the remainder of this essay I am interested in thinking through the conceptual implications of opacity, and black-boxing, for contemporary ideas of selfhood and their articulation in an era of digital media.
To do so I want to discuss three distinct arenas that initially seem to have little in common: contemporary theories of digital culture, histories of research into the medical condition epilepsy, and a 2012 piece of Twitter fiction by American author Jennifer Egan. The three converge via their heavy reliance on one of the key metaphors through which this rhetoric of opacity articulates itself: the ‘black box’.
In 2011 media theorist Alexander R. Galloway posited that the cybernetic world in which we live is predicated on the black box.
It is thus today no longer a question simply of the enemy’s black box, but the black boxing of the self, of any node contained in a network of interaction. The enemy’s machine is not simply a device in a German airplane, it is ourselves: a call center employee, a card reader at a security checkpoint, a piece of software, a genetic sequence, a hospital patient. The black box is no longer a cipher waiting to be unveiled and decoded, it is a function defined exclusively through its inputs and outputs.2Alexander Galloway, ‘Black Box, Black Bloc’ in Communization and its Discontents: Contestation, Critique, and Contemporary Struggles, ed. Benjamin Noys, Brooklyn: Minor Compositions/Autonomedia, 2011: 237-249, p. 243.
Black boxing, simply put, is an approach developed by military strategists during the Second World War, in which, rather than opening up an entity to discover its operations (which in the case of a missile might risk detonating it), the focus is placed entirely on inputs and outputs. We don’t need to know what goes on inside the box, as long as we can record what goes in and what comes out—effectively how it interacts with its environment (or 'network'). We may then be able to deduce what goes on inside the black box—or, more radically, we may choose to ignore the innards of the container entirely.
As Galloway, and many other scholars, point out this approach has dominated our world since mid-century. Far from being restricted to programming and cybernetics, black boxing and its emphasis on the network has been applied much more widely in contemporary society, from political actions to the postfordian worker. While Galloway in his essay proffers the radical view that black boxing might offer a route to political agency, others consider black boxes to be the problem. In his book The Black Box Society, Frank Pasquale declares that:
Everything we do online is recorded; the only questions left are to whom the data will be available, and for how long.... The law, so aggressively protective of secrecy in the world of commerce, is increasingly silent when it comes to the privacy of persons.3Frank Pasquale, The Black Box Society: The Secret Algorithms That Control Money and Information, Cambridge MA: Harvard UP, 2015, p. 3
The metaphor of the black box is a pertinent one for him, marking both a recording device and a mysterious system, it is ‘a signal that information imbalances have gone too far’. For Pasquale and for many other critics of digital society, the black box offers a metaphor for engaging with distinctions between access and obfuscation (or legibility) that have become crucial today.4
Clearly the black box has proven to be a productive approach and metaphor, or what Philipp von Hilgers has called (following Hans-Jörg Rheinberger) an ‘epistemic object’,5 across decades. Today the epistemic object offers scholars of digital culture a means by which to examine the implications of living within, and conducting critiques upon, a society seemingly rendered opaque by digital technologies. In my own work, in the context of literary criticism, I have noted that the formalist methods of the New Critics in the 1940s in effect black boxed authors by denying them interpretative agency over their own work.6 While approaches to literary analysis have shifted since then, it is notable that opacity continues to be a major challenge for those wishing to conduct cultural critique.
We live in a society in which transparency is championed (albeit with pushback in recent years), not least by those social media giants who monetise our data. Yet the digital culture researcher faces the problem of opacity on two fronts, one in the form of access—the data and technology is often proprietary or engagement requires prohibitive computing (or other) overheads—and the other in the form of legibility—they lack the technical expertise to fruitfully engage with the technology. How we might work within this rhetorical and practical paradox, is what I want to think through in the remainder of this piece.
To do so I want to begin by examining the black box in a slightly different context. While the origin of the epistemic object is usually traced back to the military context of the Second World War, the black box also has an alternative lineage, a lineage that I would discover via my research on the relationship between epilepsy and digital media.
In the list Galloway gives above, mention of the hospital patients falls at the end, a seemingly casual example among many of the black-boxing of the self in contemporary society. In fact, the patient is at the bedrock of this piece, a central figure in an argument that draws together the history of medicine and digital technology to reflect upon subjectivity today. Galloway’s description of the 'black-boxed self' seems to me a useful place to begin teasing out some of the issues around representations of identity, non-normate identities and the body in a networked digital setting.
Patient use of the Internet (whether 1, 2.0 or the semantic web) to share information, advocate and build communities has been a major focus of much research by data scientists, health sociologists and medical investigators in recent years, with attention paid to the changing dynamics this is bringing to clinician-patient relations, to patient knowledge, to medical research itself and to the 'patient experience' overall. 'Solidarity' is also a topic of interest, with health-specific forums and chatrooms providing patients with valuable support and collective identity. Galloway’s identification of the hospital patient as a 'node contained in a network of interaction', chimes strongly with this valuable research, attending as it does to networks and interactions.
However, I want to take a slightly different approach here; while retaining an eye on the network, I want to zoom in on the 'node.' Humanistic, perhaps, but I want to think about what the notion of black-boxing might mean for the subject’s sense of self—and its communicative possibilities. Obviously, this has specific import for individual patients, but it also has wider implications for the medical humanities, and digital health in general, where linguistic representations of the body and pain are so epistemologically and politically significant.
Ego Media & Epilepsy
My turn to epilepsy, a somewhat idiosyncratic brain condition, might seem like a curious quirk of my argument. In some ways it is: the product of the Ego Media project’s design and in particular its aim to foster interdisciplinary collaboration. One of the major manifestations of this aim has been a research alliance between myself (a literary scholar), Leone Ridsdale, a neurologist, and Alison McKinlay, a researcher in psychology and neurology. Our aim was to examine the impact of digital media on people with epilepsy (PWEs). You can learn more about the project and its findings here: Interactions with Health-Related Information Online in People with Migraine and Epilepsy. The initial project aimed to:
study a group of patients with epilepsy, a chronic condition with profound social and biographical implications, and their use of social media and the digital environment more broadly. Subjects will be recruited from members of the British organisation Epilepsy Action. The project aims to explore how these patients engage with social media to present themselves, interact with others who share the experience of epilepsy, and shape their sense of self. The study draws on research and methods from various disciplines, including medicine, the medical humanities, literary studies, socio-linguistics, the digital humanities, surveillance studies and human-computer interaction (HCI); a combination of qualitative interviewing and close reading form the basic methodological approaches. It is hoped that such a study will be of benefit to medical practitioners and software designers seeking to improve the existing information and resources (and develop future offerings) available to patients. As a second objective, the project aims to update research on how epilepsy is understood culturally in the digital age. More widely, it is anticipated that the research will offer a valuable case study for broader explorations into representations and experiences of the body, consciousness and subjectivity in a culture increasingly dominated by social media and digital technologies.Rebecca Roach, 'Project summary: The Impact of New Media on People with Epilepsy' http://www.ego-media.org/projects/the-impact-of-new-media-on-people-with-epilepsy/, 1 May 2015
As part of this collaboration I conducted research into the history of conceptual understandings of epilepsy, seeking to place contemporary medical responses to the condition and its wider cultural representation within a longer chronology. One of the most striking findings for me was the degree to which, since the middle of the twentieth century, epilepsy has been represented in technological and cybernetic terms. Drawing correspondences between the faulty electrical circuit (and in particular that of the malfunctioning computer) and the brain seizure has become commonplace. I have outlined this history in my article “Epilepsy, digital technology and the black-boxed self” where I argue that such a technologising of epilepsy has had significant consequences for PWEs. In particular I note that these subjects have been ‘black boxed’—rendered opaque—by the medical establishment and in our broader culture.7
While the focus on epilepsy might seem initially odd, in fact it turns out to be an unusually productive case study for examining the import of digital media on selfhood and for considering the questions around opacity that I have outlined above. To understand why, we need to delve further into the specific (and historical) nature of PWEs’ black boxing.
Like many neurological conditions, good understanding of epilepsy has only developed in the second half of the twentieth century. Prior to this it had proven difficult to both diagnose and categorise, but with the development of technologies such as EEG machines, (and later PET and fMRI scanners) which can trace brain activity, the electrical pattern of a seizure has become visible to medicine. Computational medicine has in effect opened up the black box of the brain to reveal a system functioning imperfectly. Such visibility has improved diagnosis, and reduced culturally stigmatic associations of epilepsy with spirit possession, mental illness and immorality. Opening the black box has had some tangible cultural and medical benefits for people with epilepsy.
However, it has also brought new challenges.
Current treatment of epilepsy, with its focus on self-management, underscores the patient-as-function model. As with many chronic conditions, the medical focus is upon tracking inputs and outputs, monitoring seizures and managing symptoms. The ideal is to obtain 'good control'. We are firmly in the logic of Taylorised capitalism here and the precisely controlled body of the factory worker it requires. The seizure is conceived to be the symptom of an uncontrolled body in need of Foucauldian discipline.
Having opened up the black box of the brain, medicine has firmly re-sealed the lid around the whole patient, a trend only amplified in the era of digital health as software developers offer a range of digital aids to help patients monitor their condition. Apps range from those intended to replace a paper diary, which require the patient to input medications and symptoms, to sousveillance-based alert systems, which bypass the patient’s conscious input, to monitor the body. The overarching trend is towards subjects treated as quintessentially opaque black boxes, reduced to a series of inputs or outputs to be carefully controlled.
Such quantification has troublesome implications for individual selfhood given that interiority—or consciousness—is potentially rendered disrupted, inaccessible or irrelevant by such a model. This is something to which I will return. But before I do so, I want to press at the specifics of epilepsy’s black boxing and in particular the historical relationship between the condition and cybernetics: a system of ideas that underpins not only computation but also contemporary notions of selfhood and embodiment labelled by Katherine Hayles as ‘posthumanism’.8
Cybernetics & Epilepsy
Cybernetics is ‘the study of messages as a means of controlling machinery and society’.910 Conceived in the years around World War Two, this field utilised a dematerialised and statistical understanding of ‘information’ to study systems—black-boxed or otherwise. This approach was vital to the development of digital computing and the technological advances that have transformed our world over the last half-century and more.
Cybernetics is heavily associated with the mathematician Norbert Weiner, who would spearhead the new field in books such as Cybernetics: Or Control and Communication in the Animal and the Machine (1948) and the best-selling The Human Use of Human Beings: Cybernetics and Society (1950). From the outset, however, (and as Weiner’s subtitles indicate) it was an interdisciplinary effort that would also have influence across a host of disciplines aside from computer science, whether economics, ecology, art, psychology, or biology. In the field of medicine, this reconceptualisation of the brain as an opaque closed system (akin to a computer) enabled neurologists and behaviourist psychologists, amongst others, to utilise cybernetics’ black-boxing and system analysis approaches on what had hitherto been inaccessible: the functioning human mind. In the case of epilepsy, such systems-theory approaches have, as we have seen, underpinned many of the contemporary approaches toward understanding and managing the condition. In a telling nod to it cybernetic ties, medicine aims to gain good ‘control’ for the PWE, conceived as the reduction of seizures.
The oversized importance of cybernetics for digital computing encourages us to conceive of this conceptual link between cybernetics and epilepsy as emphatically unidirectional and as originating with the former. However, my own research into epilepsy and its technologising suggests a different relationship. Attending more closely to the intellectual history of cybernetics reveals a situation in which understandings of epilepsy informs emergent theories of cybernetics and not the other way around. We can, in other words, feasibly talk of an epileptiform cybernetics.
Histories of the cybernetics movement rarely mention epilepsy, but the condition and its conception would shape the nascent field in important ways. For Weiner epilepsy was a key example of the brain functioning as a computer in his field-defining
Cybernetics (1948) and even the early foundational co-authored paper ‘Behavior, Purpose and Teleology’ uses the example of the diseased cerebellum (of which epilepsy can be a sign) to discuss malfunctioning feedback control.11 More significantly, many of the individuals who would play a key role in defining the emergent field came to it following years working on epilepsy research.
One of the key players would be Warren S. McCulloch who would become a close colleague of Weiner’s.12 In the history of cybernetics McCulloch is best known for his foundational work, with logician Walter Pitts, on the topic of neural nets. Their 1943 paper ‘A logical calculus of the ideas immanent in nervous activity’ set out the formal analogies between Alan Turing’s 'Universal Machine' (the theoretical idea behind the electronic computer) and neural networks in the brain. It would be a crucial contribution to cybernetics. Before his collaboration with Pitts McCulloch had spent twelve years working as a neurologist and physiologist. In Bellevue Hospital in New York, at Yale’s Laboratory of Neurophysiology, and later the University of Illinois’s Department of Psychiatry, where he met Pitts, McCulloch studied seizure patterns, and trauma-related epilepsy as part of a general interest in brain localisation. McCulloch’s work on neural networks was strongly influenced by his own work in epileptology.
That work drew heavily on recent developments in EEG technology. Thanks to the advent of such technologies, scientists had realised that epileptic seizures were the product of irregular electrical activity in the brain. McCulloch was centrally involved in such research, inventing his own eponymously named EEG machine and in 1944 he would lure Frederic and Erna Gibbs, pioneers in the use of the technology to diagnose epilepsy, from Harvard to Chicago. His work from the late 1920s on seizures and electrical excitability in the brain would lead him to explore the mechanisms by which, and thresholds at which, neurons would fire. This interest in the physiology of the course or ‘spread’13 of a seizure would lead directly to his work with Pitts, their formalisation of the neuron and their application of Boolean logic to the brain’s neuronal systems.14 He would also apply such understandings to the working structures of the brain in his classic 1944 work ‘The Functional Organization of the Cerebral Cortex’.15
McCulloch was not alone among cyberneticians in having a background in epilepsy and seizure research. The limited nature of biological research for the war effort in Britain between 1939 and 1945 would lead to a number of researchers being co-opted to work on radar and the emergent communications theory—such intermingling of disciplinary knowledge would birth cybernetics. Even more specifically, the Ratio Club, Britain’s unofficial centre for cybernetics ideas in the aftermath of the war, would contain members were actively involved in research into epileptiform brain wave patterns.
The club was founded by neurologist and EEG researcher John Bates in 1949, the first meeting was designed to coordinate with McCulloch’s attendance at the Anglo-American Symposium on Psychosurgery, Neurophysiology, and Physical Treatments in Psychiatry so that he could attend. Members included the neurologist W. Grey Walter who in the 1930s had played a key role in developing EEG machines for clinical application: his research demonstrated that PWEs often displayed abnormal brain wave patterns and helped to move the study of epilepsy from the psychiatry to the neurology department.16 Other members of the Ratio Club with direct research interest in neurophysiology, epilepsy or EEG included W. Ross Ashby, Donald MacKay, Horace Barlow, George Dawson, Turner McLardy, Pat Merton and William Rushton.17
I narrate these links at some length in order to underline the degree to which the emergence of cybernetics can be conceived as an outcome of research into epilepsy at the time—albeit an extremely influential outcome—as it can be conceived vice versa. Experiments with EEG technology had offered a new kind of real time output (electrical waves) from which scientists could infer what might be going on inside the brain during a seizure.18 Grey Walter would take this further in later years, managing to identify an input: flickering lights could produce the output of a seizure and its concurrent EEG patterns.19 Crucially then, these researchers were familiar with working with electrical outputs as a means of analysing a biological system. Unlike the missile, epilepsy offered the curious example of a black box conundrum that could be analysed in mathematical and logical terms, but one that was also biological. As an unusually overt example, epilepsy took on the function of an epistemic object during the emergence of cybernetics by encouraging researchers to draw an analogy between electrical (mechanical) and biological systems, including that of the human brain. Cybernetics, in this sense, is epileptiform.
Such a conclusion is a neat point of contact in my own research trajectory. However, it also prompts a more serious follow-up question: If we can speak of epilepsy’s originating shaping pressure on cybernetics, does this have wider implications as we address the problem of what so many digital scholars have identified as the black-boxing of society and the self today? To put it another way, can epilepsy continue to function as an epistemic object today? Can attending to epilepsy’s cultural history clarify for us some of the broad import of living in a cybernetic society?
These are questions I want to explore, but I emphatically do not want to universalise the real-world experiences of living with an often-stigmatised identity and a condition that can result in a spectrum of disabilities and sometimes death. Here I am interested in the epistemological and formal questions that this analogy prompts, with the full knowledge that issues concerning the material, social and embodied aspects of the condition must always outweigh them.
Epilepsy continues to act as an epistemic object in our contemporary world. Albeit, this is in a slightly different manner. Epilepsy is still consistently understood through technological analogies in the West and the rhetorical black boxing of the PWE is common today. Such an analogy is common in cultural representations of epilepsy and is central to current treatment strategies, which although often pharmacological, still underline patient monitoring and self-regulation as a key feature (a trend that has accelerated with the advent of digital health monitoring devices and apps). Yet, while in the early days of cybernetics research the focus was upon seizure patterns, today it is the societal status of the PWE—in particular the legal, political and cultural ramifications of their black boxing—that is especially suggestive for digital scholars.
From a societal perspective, epilepsy has several features that mark it as a suggestive condition for scholars interested in reflecting upon the status of the individual in a black-boxed society. For the PWE, a seizure that results in a state of altered consciousness can create the unusual situation wherein they have limited or no direct access to the event that, to an observer, marks them as the possessor of a stigmatised identity. The PWE is both black-boxed and marked by their condition. Individual agency around access and legibility is lost. Although the experience of the PWE undergoing a seizure is very particular, given that the black-boxing of the self is considered a general feature of contemporary digital society by numerous scholars, we might ask whether we can learn something from responses to the PWE’s experience.
Two recent topics of discussion in digital culture might particularly draw on research into epilepsy. The first concerns a shift in the subject’s temporal experience in our digital era and its participatory implications. In finance, for example, trading is often conducted via algorithms (often called ‘black-box trading’) at a speed and frequency that no human being can match—which significant implications for oversight and our experiences of time. Summarising the implications this turn from ‘a past-directed recording platform to a data-driven anticipation of the future’ that he labels ‘twenty-first century media’, Mark Hansen notes that ‘perceptual consciousness is simply left out of the loop when data-gathering and passive sensing capacities grasp the 'operational present' of sensibility at time frames from which conscious activity is excluded’. The result is that ‘consciousness can only impact the actual happening indirectly and in a proleptic or anticipatory mode’.20 Increasingly, we must engage in predictive acts of consciousness, or be too late to assert agency—a state that media scholar David M. Berry has called 'algorithmic humanity' or 'a subject with a comportment towards waiting which forgets as a condition of everyday life and lives, therefore in the radical present'.21
Although the focus of much contemporary media scholarship, this shift has already garnered a fair amount of attention in the arena of health. In the last few decades we have seen a general move towards what David Armstrong has termed 'surveillance medicine'. Writing in 1995, Armstrong identified a contemporary mode of medicine based on the surveillance of normal populations. Responsibility is now given to patients—or indeed subjects—to surveil themselves, at the same time as we see the general dissolution of the categories of ill and healthy and instead a new orientation towards predictive medicine. As Armstrong puts it: “in surveillance medicine illness becomes a point of perpetual becoming”, or a network of risk factors.22 Such temporal reorientation of illness is further supported by the rise of patient-centred medicine, the explosion of digital health offerings (including genome risk testing and sousveillance devices) and the expansion of chronic health conditions, of which the lived experience is heavily anticipatory.23 From this perspective, the ‘always potentially a patient’ subject has been the model for the representative digital subject: forever aligned towards the future, with only the ability to assert agency predictively. The patient has become the representative model for our digital society.
The second (related) discussion is that of the nature of human consciousness in our digital environment. Hansen’s interest in the contemporary status of perceptual consciousness is one shared by numerous scholars. Katherine Hayles, perhaps most extensively, has argued that we need to rethink our understanding of cognition in a world in which human consciousness is often curtailed—and agency ‘punctuated’.24 Coining the term ‘nonconscious cognition’, Hayles points to the cognitive capacity that, though often neglected by theorists, exists beyond consciousness, that is inaccessible to modes of awareness but is the essential basis on which consciousness functions.25
Hayles is engaging with the posthuman environment she explicitly ties to the birth of cybernetics—again she argues for the relevance of embodiment to cognition, whether in technical or biological systems.26 However, we can also see a more direct analogue with the PWE. Hayles notes that recent neurological and cognition research has identified the degree to which nonconscious cognition acts to process information: in an era of computational (or twenty-first century) media in which consciousness is often perceived to be ‘belated’, nonconscious cognition is therefore ‘especially important in environments rich in complex information stimuli’.27 Far from an inferior form of cognition inaccessible to introspection, it aids consciousness by limiting the amount of information that the latter must process.28
Such a broad remapping of cognition levels and their interactions deprivileges consciousness in ways that may help to intellectually destigmatise conditions such as epilepsy (if not necessarily the lived experience of PWEs). Given epilepsy’s productive conceptual value for cyberneticists and media theorists, it is perhaps no surprise that Hayles herself turns to the condition in her book. In a chapter exploring the ‘costs of consciousness’ Hayles examines the novels Remainder, by Tom McCarthy and Blindsight, by Peter Watts. While the former features a protagonist with a traumatic brain injury, the latter, a futuristic science fiction novel, has as its protagonist the character of Siri Keeton who has lost the ability to feel empathy thanks to the surgical removal of one hemisphere of his brain to cure his epilepsy. Crafting informational processing solutions—stuck in Searle’s Chinese Room he learns read the data available to him, including facial tics and other behavioural tells etc.—that resembles nonconscious cognition, Siri attempts to circumnavigate the limitations of his consciousness. Among a host of other characters who exhibit limitations to their higher consciousness activities—such as vampires who experiences tonic clonic seizures when exposed to right angles—and threatened by a technologically advanced alien life form that lacks consciousness, Siri is part of a novel that exposes ‘the limitation of conscious thought and the inadequacy of equating cognition with consciousness alone.29
For Hayles, Blindsight and Remainder then demonstrates that ‘the very idea of “normal” mutates when the costs of consciousness are taken into account. They suggest that “normality” cannot be sufficiently anchored by consciousness alone, or indeed by human cognition.’30 In our contemporary era, wherein the human is being decentred, and technical cognition is increasingly prevalent, the PWE then offers a culturally familiar exemplar of the non-normate that is now morphing (appropriately or not) into the mainstream.
With consciousness potentially decentred, disrupted and rendered inaccessible or irrelevant in our digital age, clearly there are implications both for issues pertaining to biopower and individual selfhood. Our legal, political, economic and cultural systems are based around the idea of an agential liberal subject able to reflect with rationality and self-awareness. Where does this leave us? How do we get out of the black box? Given that the implications of such questions are often at the forefront of discussions in the medical humanities, examining these debates might well offer digital scholars some ways of framing their conversations.
In Blindsight, Siri notes that human language, stemming as it does from consciousness, might appear to the nonconscious aliens as an attack: 'How do you say We come in peace when the very words are an act of war?'31 Language, the ability to represent and communicate interiority, is itself a product of consciousness. For precisely this reason, there has been a big push in the medical humanities and disability studies over the last thirty years in favour of so-called ‘illness narratives’ or ‘narrative medicine’ as a means of individuals gaining ownership over their experiences through linguistic representation.
At the same time that surveillance medicine has emerged, researchers and medical practitioners such as Rita Charon, Arthur Frank, Arthur Kleinman and Kathryn Montgomery have developed the field of narrative medicine.32333435 Attending to the ways in which individuals experience, understand and represent their illnesses, this scholarship has had a significant impact not only on those interested in thinking about relations between literature and medicine, but also with medicine itself and as part of the generalised move towards patient-centred care. Attempting to respond to and resist the conceptualisation of the patient as a series of symptoms or outputs, the behaviourist black box is (theoretically at least) repudiated in favour of narrative-sensitive medicine that is conscious of the individual experience. Or, as one scholar put it, 'The call for a narrative medicine has been touted as the cure-all for an increasingly mechanical medicine'.36
However, in the case of epilepsy, narrative medicine seems somewhat inadequate: the seizure, which is so culturally stigmatising, so determining, for the observer is frequently experienced as an absence or lacuna by the person with the condition. They have no conscious, personal access to that event, only its aftermath. The significant event has occurred offstage. In the terms of Galloway, from the perspective of the subject, the seizure functions to black box the condition and its meaning for the self. But from the perspective of the observer, the seizure functions as a significant output and in doing so, unveils a hidden identity, retroactively producing a cipher. While not wanting to reject the possibility that patients could utilise life writing more generally to experience and express their identities, narrative might not be the most useful analogue for patients with epilepsy.
This should perhaps raise warning bells for the applicability of narrative medicine in our digital age. Given the degree to which, as we have seen, epilepsy offers an apt epistemic object in our digital era, we might question the degree to which narrative medicine offers a resistive strategy in the realm of digital health. For Galloway, of course, the black bloc that might offer a politics of resistance in a cybernetic world is based on mystification, not descriptive and plotted communication.
We should also note the prevalence of black-boxed understandings of consciousness today. Cognitive Behavioural Therapy (CBT), with its disinterest in hermeneutics and instrumental, input/output approach toward consciousness, has to a large extent supplanted prior models of the ‘talking cure’ for the treatment of mental health disorders. This cybernetic, black-boxing approach, and the broader move (abetted by new medical technologies) away from psychoanalytical, hermeneutically-oriented models towards those based on neurological ‘mapping’ in the arena of consciousness studies, deprivileges narrative.37
Scholars of life writing have recently begun to consider how these narrative forms might be adapting in a digital era. Against a general background of research into how identity is represented across internet platforms, in network environments and in new modes, scholars of the medical humanities are reflecting on the status of narrative medicine in a digital age.3839 Certainly, in the context of digital health, sousveillance and self-management devices are often criticised for, like many other medical technology and practices, quantifying and black-boxing the self. Indeed, Deborah Lupton has called for a new ‘critical digital health studies’ to reflect on the wider implications of digital health on subjects today.40
As well as black-boxing the hospital patient, these new devices and practices can provide personally-produced logs or accounts of the body. In the case of PWEs, a digitally-enabled chronicle of a consciousness lacuna might offer (in a twist on David T. Mitchell and Sharon L. Snyder’s term), a ‘narrative prosthesis’41: a form of life writing that bypasses consciousness but is still produced by the self.42 Moreover, the data logged by such devices can act as an important affective or socio-political prompt for the individual. As Olivia Banner suggests, the bioinformatic data such devices produce can enable the individual to recontextualise their symptoms into a medical text.43 For those suffering from conditions deemed sub-medical (for example chronic fatigue syndrome) the data produced can offer objective valence to the individual’s suffering and potentially support community activism. In the case of epilepsy, the often-silenced voice of the person experiencing the seizure (as opposed to that of the onlooker) is perhaps inscribed in this data. Although it sounds like a contradiction in terms, we might even want to think of this as 'black-boxed life writing'.
Such life writing also has the potential to redefine the 'narrative' of narrative medicine. For the digital patient dwelling in the continuous present, narrative with its causative, temporal emphasis is not always the most useful model (as we shall see in Egan’s story). Critics of narrativity, such as Galen Strawson, have often made the point that not everyone experiences their life as a narrative, indeed some people’s self-experience is episodic.44 For some in the medical humanities, such as Angela Woods, narrative medicine is accordingly politically and critically limited in its current form.45 Yet it doesn’t necessarily follow that the ‘anonymization and massification’ of Galloway’s black bloc is the appropriate alternative.46 In the case of the PWE, as I have suggested, black-boxed life writing might offer a resistive position: representing an output that the individual can claim as their own in a world in which they are always already black-boxed. It might offer an opportunity to, via experimentation, explode inherited norms around narrative and cognition—to detonate the observer’s black boxing assumptions.
To explore these possibilities, I want to follow Hayles in her engagement with literature. I turn therefore to a short story by the American writer Jennifer Egan. While not about epilepsy, the story, titled 'Black Box', does explicitly engage with pertinent issues around sous- and surveillance, digital technologies and the relationship between consciousness and the body. It also offers a suggestive complement and challenge to Galloway’s essay in its exploration of what black boxing might mean for not only for an individual’s perception of consciousness and selfhood, but that self’s linguistic communication or expression across time. What I am suggesting is that Egan’s technologically savvy and experimental story offers a means to test the formal and narrative limits of the black box.
Narrative Medicine in a Digital Age
Literary Black Boxes
Literature might seem an odd place to turn after discussions of cybernetics and medicine. However, as a mode of representation, it has long been interested in representing consciousness and its limits—as Hayles indicated. In particular, how to represent individual subjectivity and interiority, with all their temporal and experiential quirks, within language and form has been a central concern of writers across centuries. Literature endeavours to make forms of consciousness—and the unconscious—accessible. We might think immediately of modernist experiments in conveying consciousness, but Laurence Sterne’s famous blank page in The Life and Opinions of Tristram Shandy, Gentleman (1759-67) invited readers to reflect upon the limits of representation 250 years before that.
Further, literature is perceived to bring into being—to make legible—new ways of understanding the self and subjectivity—and via the act of reading, new ways of understanding the relationship between self and society, and community formation. Literature’s ethical claims frequently turn on the idea that it encourages empathy with the other via its communication of singular experiences and emotions to the reader.
Given the orientation of its subject, literary and life writing studies thus provide a long-established set of tools and terms for exploring questions concerning consciousness, its representation and indeed the limitations of linguistic representation. It is therefore to literature and literary analysis that I turn in order to reflect on these questions concerning opacity and the black-boxed subject today.
In 2012 Jennifer Egan’s story ‘Black Box,’ was first tweeted by and published in the New Yorker. As the name suggests, this is a story that explicitly engages with the guiding metaphor of my essay.
Against the backdrop of government spying, ‘Black Box’ explores the fusing of technologies of surveillance with the human body. Protagonist Lulu’s body has become the black box recorder in a theatre of war, complete with 'Universal Port' and devices implanted in ear, eye, under hairline, behind knee.47 Fusing body and technology, Lulu is the quintessential cyborg woman, a 'Beauty' whose task it is to surveil her target, or 'Designated Mate,' by being 'both irresistible and invisible'.48 Technical and militaristic advances are depicted as a nightmare perpetuation of female objectification; Petrarch’s Laura is now a cyborg.
Yet such objectification is also the source of obfuscation in this story. Woman’s 'boxes' have always been the source of mystification and it is crucially the female body—beautiful or bruised—that is the black box here. The beautiful body can allay suspicion: ‘A smile is like a shield’.49 Opaque to observers, such a body is, however, also a crucial data repository: 'Your physical person is our Black Box; without it, we have no record of what has happened on your mission.'50
As should already be apparent, while Egan’s story does examine black-boxing, it is the result of a very different circumstance to that of the PWE. Inaccessible memory is not the result of electrical activity within the brain, but rather of what is done to the body outside of consciousness—what is done to one body by another. If Lulu’s body forms the most obvious black box recorder, the story is in fact more interested in the relationship between the black out, memory gap and sexual violence. Black boxing becomes gendered in this story. In so doing Egan hints at the social construction of perceived relations between representation and embodiment.
Read in the context of Egan’s story, Galloway’s essay takes on some rather disturbing overtones. Here’s Galloway: 'Splayed open, the box begs to be touched, it exists to be manipulated, to be interfaced.'51 The sexualised language of this passage is hard to ignore; what Egan’s story does is to indicate, like Haraway before her, how often discussions of technology reaffirm stereotypes of femininity and the sexualised female body. In this story a transfer of information, or ‘Data Surge’ into the Beauty’s universal port (between her toes), also involves a low-tech ‘red ribbon’, recalling long-standing tropes of the woman as gift and scarlet letters, with the recalled dangers of female speech (and sexuality).52 This black-boxing of the self then doesn’t offer quite the liberatory political position that Galloway envisions. If, as David M. Berry argues, Galloway romanticises opaqueness as pure love, in Egan’s story such troublesome idealisation is the necessary precondition for opacity and a cybernetic society.53
In this reading then, Egan’s focus on the sexualised, objectified and abused female body becomes one more example of the non-normate subject in a digital society. Although clearly the particularity of women’s and PWEs’ experiences should not be dismissed, in an era in which digital technologies are still overwhelmingly designed, deployed and regulated by cisgender, able-bodied, white men, examining the ways in which perceived exceptions to this normate identity are conceived and represented is valuable. What is notable here is the degree to which a tactic that—as our attention on the historical conception of and treatment of epilepsy, and Egan’s (and many other writers and scholars’) on the female body here attests—has been predominantly applied to the non-normate, is now perceived to have become a mainstream experience, which for Galloway at least, has positive potential.
This is not to say, however, that Egan’s story is not deeply reflective about the specific gendered implications of black boxing. Black-boxed though the female body may be, Egan also suggests the possibility of a self outside of and distinct from the confines of that box. Her figuration of mind and body is surprisingly Cartesian, albeit with the addition of digital prostheses. The so-called 'Dissociation Technique' figures prominently in the narrative as a process for dividing the self from traumatic sexual experience and pain:
Close your eyes and slowly count backward from ten.
With each number, imagine yourself rising out of your body and moving one step father away from it.
By eight, you should be hovering just outside your skin.
By five, you should be floating a foot or two above your body, feeling only vague anxiety over what is about to happen to it.
By three, you should feel fully detached from your physical self.
By two, your body should be able to act and react without your participation.
By one, your mind should drift so free that you lose track of what is happening below. 54Jennifer Egan, ‘Black Box’, Section 8.
Mind and body are spatially distinct; and the body has also been black-boxed by the mind in order to avoid retrospective decoding of a sexual assault. While mind/body is not necessarily a useful dualism for those with neurological conditions—nor, as Hayles noted, an accurate depiction of the relationship between embodiment and cognition—, the insistence here that consciousness and black-boxed body might offer two very different accounts of an event, offers a useful entry point for thinking through the experience of the cybernetic self.
The narrative also reflects this experience. The act of sexual violence is not described: the reader, like Lulu, is left to fill in the blanks belatedly via conjecture and signals from the body (sore limbs, a scraped forehead). Here nonconscious cognition and sensory information informs consciousness after the fact—for both character and reader.
This then, is also a story about representation of consciousness in an era of technological innovation. These might well be non-linguistic forms of representation. Lulu is able to communicate to the outside world via her ‘Subcutaneous Pulse System’. Emitting ‘pings so generic that detection would reveal neither source nor intent’, the daily signal entails pressing a button behind her right knee in order to ‘indicate to loved ones that you are well and thinking of them’.55 Recalling social media ‘Like’ buttons, here communication has been reduced to a generic signal and message that originates outside of language. So too, Egan features telepathic communication: in the form of ‘Field Instructions’:
For Clearest results, mentally speak the thought, as if talking to yourself.
When your mission is complete, you may view the results of the download before adding your Field Instructions to your mission file.
Where stray or personal thoughts have intruded, you may delete them.56Jennifer Egan, ‘Black Box’, Section 15
These are communications for the future: in the present they are held within the black-box of the body, until they are downloaded and rendered communicable, and editable. In some ways they offer a familiar life writing narrative, but one that is mentally inscribed via technological supplement. Such mental dispatches rely on consciousness, while still pressing at the limits of conventional representation.
Egan’ interest in representing consciousness extends to her formal choices. Written as a series of tweets, the restricted character length, repetition and serialised format of the story reminds us of the systematised outputs of life-logging or sousveillance. The grammar of these tweets, frequently in the conditional or future indicative, also creates an indeterminate temporality. The reader is positioned within a constant, uncertain present: a temporality symptomatic of our experience of living in contemporary digital society, as we have seen.
This temporal manipulation is also reflected on a larger scale; Egan’s style and discrete textual segments do not purport to cohere into a narrative of causation, but rather they chronicle outputs. In an interview she suggested that ‘My working title for this story was ‘Lessons Learned,’ and my hope was to tell a story whose shape would emerge from the lessons the narrator derived from each step in the action, rather than from descriptions of the action itself.’57 Formally, then, the plot is black boxed; action is a lacuna with only the lesson or output narrated. Such formal experimentation draws the reader’s attention to the temporal gaps that exist within our experiences of consciousness. Egan’s story reminds us of the discontinuities, the differing speeds by which cognition operates and the role that contemporary (and future) technologies might play in both exacerbating and tempering those discordances.
As Egan’s interview comment reveals, ‘Black Box’ was not the initial title for this story. Nor was it created on social media— despite Twitter being the ‘catalyst’ for the story (comparable to her famed use of PowerPoint in The Goon Squad), Egan has spoken of having drafted the story by hand, in ‘a notebook that had eight rectangular boxes on each page’.5859 Yet, the eventual title and media form of the story work, very appropriately, to underscore literature’s long history of representing consciousness and ability to reflect upon the intriguing innovations and fissures that new media formats and practices open up for such representational practice. In ‘Black Box’, the metaphor becomes a site at which to interrogate the ways in which we understand and represent consciousness today.
Reading Egan in conjunction with Galloway and the history of epileptiform cybernetics has I think indicated some important pressure points in the latter’s association of black boxes with political agency (black blocs or otherwise). It has also identified ways in which our understanding of consciousness and its cultural representation might be undergoing a radical shift in the digital era.
Digital literature has posed some interesting questions in this arena: how, for example, might traditional ‘close reading’ methods be adapted for a situation in which the ‘text’ is spread across the user interface, software and even machine-specific coding? Or where distant and machine reading offer conceptual alternatives?↩
- Alexander R. Galloway, “Black Box Black Bloc,” in Communization and Its Discontents: Contestaton, Critique, and Contemporary Struggles, by Benjamin Noys, e-book, Minor Compositions (New York: Autonomedia, 2011), 237–49, www.minorcompositions.info. : 237-249, p. 243.. ↩
- Frank Pasquale, The Black Box Society: The Secret Algorithms That Control Money and Information (Cambridge: Harvard University Press, 2015). p. 3. ↩
- Pasquale, The Black Box Society. p. 18, 6.. ↩
- Philipp Von Hilgers and William Rauscher, “The History Of The Black Box: The Clash Of A Thing And Its Concept,” Cultural Politics 7, no. 1 (2011): 41–58, https://muse.jhu.edu/article/584290/summary. p. 46.. ↩
- Rebecca Roach, Literature and the Rise of the Interview (Oxford: Oxford UP, 2018). ch. 4. ↩
- Rebecca Roach, “Epilepsy, Digital Technology and the Black-Boxed Self,” New Media & Society 20, no. 8 (August 1, 2018): 2880–97, https://doi.org/10.1177/1461444817736926. 2880–2897. ↩
- N. Katherine Hayles, How We Became Posthuman: Virtual Bodies in Cybernetics, Literature, and Informatics (Chicago, Ill: University of Chicago Press, 1999). ↩
- Norbert Wiener, Cybernetics : Or Control and Communication in the Animal and the Machine (New York ; Cambridge ; Paris: Wiley ; Technology Press, Massachusetts Institute of Technology ; Hermann, 1948). ↩
- Norbert Wiener, The Human Use of Human Beings: Cybernetics and Society (London: Eyre & Spotiswood, 1954). p. 15. ↩
SeeArturo Rosenblueth, Norbert Wiener, and Julian Bigelow, “Behavior, Purpose and Teleology,” Philosophy of Science 10, no. 1 (1943): 18–24, https://doi.org/10.1086/286788. p. 20. ↩
For an excellent summary of McCulloch’s life and intellectual contributions, seeTara H. Abraham, Rebel Genius: Warren S. McCulloch’s Transdisciplinary Life in Science (Cambridge, Massachusetts: The MIT Press, 2016). ↩
- Warren McCulloch, “Mechanisms for the Spread of Epileptic Activation of the Brain,” Electroencephalography and Clinical Neurophysiology 1, no. 1 (January 1, 1949): 19–24, https://doi.org/10.1016/0013-4694(49)90158-3. p. 19. ↩
A more explicit articulation of the implications of their cybernetic theories (and vocabulary) for neurophysiology can be found inWarren S. McCulloch and Walter Pitts, “The Statistical Organization of Nervous Activity,” Biometrics 4, no. 2 (1948): 91–99, https://doi.org/10.2307/3001453. ↩
- Warren S. McCulloch, “The Functional Organization of the Cerebral Cortex,” Physiological Reviews 24, no. 3 (July 1, 1944): 390–407, https://doi.org/10.1152/physrev.19184.108.40.2060. ↩
SeePeter F. Bladin, “W. Grey Walter, Pioneer in the Electroencephalogram, Robotics, Cybernetics, Artificial Intelligence,” Journal of Clinical Neuroscience: Official Journal of the Neurosurgical Society of Australasia 13, no. 2 (February 2006): 170–77, https://doi.org/10.1016/j.jocn.2005.04.010. ↩
- Phil Husbands and Owen Holland, “Warren McCulloch and the British Cyberneticians,” Interdisciplinary Science Reviews 37, no. 3 (September 1, 2012): 237–53, https://doi.org/10.1179/0308018812Z.00000000019. ↩
The ‘father’ of epilepsy research John Hughlings Jackson had noted a connection with electricity back in the nineteenth century, but the EEG machine would provide crucial evidence of this pattern.↩
- W. Grey Walter, The Living Brain (London: Gerald Duckworth & Co., 1953). ↩
- Mark B. N. Hansen, Feed-Forward: On The Future Of Twenty-First-Century Media (Chicago: University of Chicago Press, 2015).
- David M. Berry, Critical Theory and the Digital (New York: Bloomsbury, 2014). p. 176. ↩
- David Armstrong, “The Rise of Surveillance Medicine,” Sociology of Health & Illness 17, no. 3 (1995): 393–404, https://doi.org/10.1111/1467-9566.ep10933329. p. 402. ↩
It it is notable that obtaining good ‘control’ over chronic conditions such as epilepsy and diabetes has been found to improve patient outcomes—as does strengthened social networks, whether facilitated face to face or via social media.↩
- N. Katherine Hayles, Unthought: The Power of the Cognitive Nonconscious (Chicago ; London: The University of Chicago Press, 2017). p. 32. ↩
- Hayles, Unthought. p. 10. ↩
- Hayles, Unthought. p. 26. ↩
- Hayles, Unthought. p. 52. ↩
- Hayles, Unthought. p. 56. ↩
- Hayles, Unthought. p. 103. ↩
- Hayles, Unthought. p. 110. ↩
- Peter Watts, Blindsight (New York: TOR, 2006). p. 325. ↩
- Rita Charon, Narrative Medicine : Honoring the Stories of Illness (New York ; Oxford: Oxford University Press, 2006). ↩
- Arthur W. Frank, The Wounded Storyteller : Body, Illness, and Ethics, Second edition.. (Chicago ; London: The University of Chicago Press, 2013). ↩
- Arthur Kleinman, The Illness Narratives : Suffering, Healing, and the Human Condition. (Basic Books, 1988). ↩
- Kathryn Montgomery Hunter, Doctors’ Stories : The Narrative Structure of Medical Knowledge (Princeton, NJ: Princeton University Press, 1991). ↩
- Jeffrey P. Bishop, “Rejecting Medical Humanism: Medical Humanities and the Metaphysics of Medicine,” Journal of Medical Humanities 29, no. 1 (2008): 15–25, https://doi.org/10.1007/s10912-007-9048-7. p. 15. ↩
- Anna Munster, “Nerves of Data: The Neurological Turn in/against Networked Media,” Computational Culture 1, no. 1 (December 2, 2011), https://doi.org/20 Nov 2014. ↩
The life writing journal Biography’s two editions on ‘Online Lives’ provide a useful history of this trajectory. The first isJohn Zuern, ed., “Special Issue: Online Lives,” Biography 26, no. 1 (Winter 2003). ↩
The second isLaurie McNeill and John David Zuern, “Online Lives 2.0: Introduction,” Biography 38, no. 2 (August 24, 2015): v–xlvi, https://doi.org/10.1353/bio.2015.0012. ↩
- Deborah Lupton, “Towards Critical Digital Health Studies: Reflections on Two Decades of Research in Health and the Way Forward,” Health 20, no. 1 (January 1, 2016): 49–61, https://doi.org/10.1177/1363459315611940. ↩
Here the term describes a prosthetic support for an absence in a potentially positive, adaptive, context. Mitchell and Snyder’s definition stems from the notion that, within narrative disability often functions as a sign of disruption that is itself in need of narrative amelioration, (with potentially programmatic results for disabled identities).David T. Mitchell and Sharon L. Snyder, Narrative Prosthesis: Disability and the Dependencies of Discourse (University of Michigan Press, 2000), https://doi.org/10.3998/mpub.11523. p. 15. ↩
Meanwhile, Ato Quayson’s discussion of ‘aesthetic nervousness’ builds on this idea, but suggests that within the literary text, such prosthesis can destabilise representation itself. Such a misuse of Mitchell and Snyder’s term is meant to highlight that current shifts in the forms and practices that produce narrative have the potential to disrupt this long-standing trend through destabilising representation itself.Ato Quayson, Aesthetic Nervousness: Disability and the Crisis of Representation (New York: Columbia University Press, 2007). ↩
- Olivia Banner, “'Treat Us Right!’: Digital Publics, Emerging Biosocialities, and the Female Complaint,” in Identity Technologies: Constructing the Self Online, ed. Julie Rak and Anna Poletti (Madison, Wisconsin: University of Wisconsin Press, 2014), 198–216. ↩
- Galen Strawson, “Against Narrativity,” Ratio (New Series) XVII (2004): 428–52. ↩
- Angela Woods, “The Limits of Narrative: Provocations for the Medical Humanities,” Medical Humanities 37, no. 2 (December 1, 2011): 73–78, https://doi.org/10.1136/medhum-2011-010045. ↩
- Galloway, “Black Box Black Bloc.” p. 239. ↩
While the story was originally tweeted by @NYerFiction over a series of days, for ease of accessibility, I cite the more stable publication of the entire story, available via the New Yorker website.Jennifer Egan, “Black Box,” May 28, 2012, https://www.newyorker.com/magazine/2012/06/04/black-box-2. Section 35. ↩
- Egan, “Black Box.” Section 2, Section 2, Section 1. ↩
- Egan, “Black Box.” Section 41. ↩
- Egan, “Black Box.” Section 38. ↩
- Galloway, “Black Box Black Bloc.” p. 239. ↩
- Egan, “Black Box.” Section 34, Section 35.. ↩
- Egan, “Black Box.” Section 8. ↩
- Egan, “Black Box.” Section 15. ↩
- Egan, “Black Box.” Section 15. ↩