Can there be dyslexia without reading? Is there face blindness without a variety of faces? Is super recognition identifiable without cameras? Without the mass production of colored textiles, does color blindness exist? If you never speak, can you have a stutter? These are thought experiments about situationally latent potentialities. We can't ever definitively answer these questions. But that doesn't mean that they don't matter. At the heart of this inquiry is a proposition that certain somatic or neurological conditions are fundamentally unidentifiable, unrecognizable, invisible, and thus cannot be made manifest in absence of some broader interactions with technology, media, and the built environment. In this essay, I bring together the history and sociology of medicine, media studies, and disability studies to argue that by studying these questions, we can open up new ways of understanding what the body once knew and now does not, and what it might one day know that it does not know now, thereby reframing what counts as illness or disability.
Can there be dyslexia without reading? Is there face blindness without a variety of faces? Is super recognition identifiable without cameras? Without the mass production of colored textiles, does color blindness exist? If you never speak, can you have a stutter?
These are thought experiments about situationally latent potentialities. We can't ever definitively answer these questions. But that doesn't mean that they don't matter. At the heart of this inquiry is a proposition that certain somatic or neurological conditions are fundamentally unidentifiable, unrecognizable, invisible, and thus cannot be made manifest in absence of some broader interactions with technology, media, and the built environment. Of course, in many ways this is true of all diagnostic categories: as numerous scholars including Annemarie Jutel, Steve Epstein, Ian Hacking, Rayna Rapp, Faye Ginsberg and others have shown, diagnosis and disease are always a function of broader cultural, social, and contextual interactions with the body and with medical infrastructure. 1 And this is true not just of diagnoses, and not just of disease: there are all kind of ways of being in the world and ways of doing things in the world that are only relevant in conjunction with the actual physical world.
Which isn't to say that I'm not saying anything. This is a real question, and one with very real stakes: what kinds of categories were once relevant and identifiable and important and no longer are because the built environment and its associated technologies and their associated cultural and social contexts changed? This is a slightly different – but related – kind of thing to Ian Hacking's example of "fugue states," which existed in a particular ecological niche that allowed for their production and identification only in those specific conditions. 2 What will one day be possible and important that is now unimaginable? There are forms of bodily knowledge and bodily interaction that are so deeply contingent they can be rendered invisible and indeed cease to exist (or be called into being) only to once again one day disappear.
This is true of all diagnoses and bodily encounters, some would say. (Most scholars of the body and medicine would say.) This position is perhaps the starting assumption of entire fields of study. And my little question, my category of analysis, may at first seem to undermine it in its insistence that something like dyslexia or face blindness is a stable neurological entity even absent the conditions of its expression. Why divorce the body from its context? What have we gained if we claim that whatever happens in the brain that makes it impossible for someone to recognize faces is there even if the faces are not? 3
It matters for the possibilities it opens up about what was once known and is not now. And for what may one day be a fact about bodies that cannot yet be understood. And because the very question insists that diagnosis is a limited way to think about bodily knowledge and bodily capabilities. While diagnosis often accompanies disease and disability, identifying limitations, impairments, and the need for accommodation, it can also, in my framework, highlight how these very categories can be mobilized in useful and advantageous ways. But only when we can know them. Only when we can see them.
Except sight is also a metaphor, and in this case the absolutely most inappropriate one. So many of these categories are ones that engage with sight and its lack: faceblindness; super recognition; color blindness; even dyslexia, which was once known as word blindness. 4 That's not, I argue, an accident: all of these specific examples are ones that are contingent on media for their visibility and identification. This is unlike, say, the whole arena of reactive or allergic or intolerant interactions (to lactose, to alcohol, to tree nuts and legumes) which are about consumption rather than mediation. And in that case, I think we can say that the allergy exists even without the nut but perhaps does not exist without the broader environmental conditions that bring it about, and the broader social interactions that bring about the cultural and environmental conditions. But with those in place, the person with the nut allergy has a nut allergy even if she does not have access to nuts. Although if there are no nuts at all, maybe this is not the case. Except nuts have been around and accessible for a very, very, long time. 5 Reading has only recently been widely accessed. 6
I remember the first time I heard cultural historian Robert Darnton speak. I was in awe. Here was a person who invented a whole field! A whole entire way of doing history! Would that ever happen again, I wondered? (Narrator: it happened again. And again. And again.) But we can ask: did Darnton invent cultural history? Wasn't it happening all along, just waiting for someone to write about it? Of course, there is a difference between the academic discipline of cultural history and the history itself. Or, let us say that doing cultural history is the practice of recording something that was always already there, combined with an analysis that was newly applied, the combination of which created a fresh intervention, and a fresh way to intervene. Scholars may invent or innovate fields, but their objects of study had to have already existed. There could be no doing cultural history without culture. And history.
That's a bit obvious. But I want to get meta here, because at first I thought I'd invented a bit of a category. (Narrator: she didn't invent a category.) At least two people have already of thought of it: Annemarie Jutel asked the exact question in her book on diagnosis with the provocation that "[d]yslexia, as one example, may be a disorder in the Western world but would not be problematic in a nonliterate society." For Jutel, it is less about the diagnostic category than its implications, as "[w]hat a particular group perceives to be problematic or unacceptable, needing remedy, is socially contingent." 7 And Philip Kirby echoed this in 2018 in a History Today piece, noting that "Before the advent of literate societies, dyslexia could not exist in the way we understand it today." 8 BUT – and this is important – Jutel didn't happen to answer the question, or put dyslexia in conversation with other related or similar phenomena. And Kirby hedged with that very useful (and appropriate) contextual phrase "in the way we understand it today." I also may not answer the question (narrator: she doesn't answer the question) but in asking it alongside other examples, I hope to describe a particular kind of interaction between body and environment, between body and technology, between body and media, thinking body as media. It's not new, exactly, but when put together in this way, it is newly defined and newly understood. Which is to say: everything in the category already existed, but I am going to put them together in a way that is new, and that tells us something new about all of them. They haven't quite been linked together this way before. And it's meta because my category itself is about the interaction of a thing and its environment and how that makes something visible that was perhaps always there, but was, prior to this interaction, absolutely undetectable.
"Was there dyslexia before there was reading" is a different question than, say, "were there children before there was childhood. The latter is a classic example of what Ian Hacking explored in The Social Construction of What, an "interactive kind" that he argues is changed or even established by its classification. This does not, he is careful to emphasize, make it less real. But he does make a clear distinction between, for example, a condition like youth homelessness and the people in question, namely homeless youths. 09 Homeless youths exist regardless of the infrastructure around the classification, but the classification and its infrastructure brings a great deal to bear upon the people it enrolls. Hacking also explained the broader contexts necessary for these categories to emerge. He offered "fugue states" as an example of a specific, highly contingent diagnosis that was limited to a particular time and set of places. This – in his terms – ecological niche provided the conditions and interactions that temporarily allowed fugue states to thrive as a category, a condition, and a lived experience. 10 Naming has "looping effects" that do something to the people in question; in another example, Hacking discusses anorexia as a category that is motivated by fatness and thinness and has effects upon the ones diagnosed with it. 11 The naming and classification itself changes the people, even as the categories and the people are part of a larger set of structures that bring new interactions into being.
Joan Jacobs Brumberg also dealt with the question of eating disorders and social construction, pointing out that bulimia requires access to abundant food and thus, at least in the nineteenth century, would have been limited to the middle and upper classes. 12 So too with anorexia in the sense that one can be starving and not be anorexic; it is the deliberate avoidance of food rather than the imposed lack of it. Again, this does not mean that the condition does not exist, but rather that there is a meaningful impact of the category of anorexia specifically as opposed to starvation generally, and the former brings with it a host of conditions that change the people associated with it in meaningful ways.
Part of the implications of these looping effects are the notion of the human subject as a category at all. Numerous scholars have discussed the emergence of this experimental framework that centered around people, offering important dimensions to their somatic experiences that connect to a broader medical, scientific, governmental, and social infrastructure. 13 Conrad and Barker emphasized these interactions in an explicitly medical context, underscoring that reality is not waiting to be discovered but is rather created by those who exist within it, in conjunction with their experiences and environment. 14 They explored the ways that a social constructivist perspective underscores all medical diagnosis and infrastructure, challenging traditional deterministic approaches to medicine.
Charles Rosenberg and Janet Golden have articulated this notion in great depth in their edited volume Framing Disease: Studies in Cultural History, which builds upon Rosenberg's foundational work on the framing of disease. 15 The framing of disease is tied to the sociological notion of medicalization, in which a given behavior or way of being in the world becomes classified or pathologized. Foucault would cite homosexuality as a key example; Zola, Conrad, and Szasz offered numerous others. 16 According to these theorists, once the behaviour or condition enters the medical infrastructure, deviance falls under the realm of medicine and science, vacating context and infusing medical social control into daily life. Ehrenreich and English also drew on these frameworks to explore the repressive medicalization of women's bodies, particularly around menstruation and reproduction, leading to hysterectomies and other forms of bodily intervention. 17 The notion of medicalization is also tied to Parsons' psychoanalytic theory of the sick role. To Parsons, the position of patient brings with it advantages and obligations that can lead to the cessation of work and other forms of societal responsibility. Parsons approached the sick role as a position of deviance and sought to police those inhabiting it. Other adoptions of the term have been less concerned with eradicating the role and more invested in understanding the patterns and expectations that accompany patienthood. Anna Cheshire and others have shown how the sick role may impact both the behaviour of the person in the role and the relationship of individuals to broader medical infrastructure and systems. 18
Disability studies has challenged a lot of the pathological approaches to disease, diagnosis, illness, and impairment. The field has theorized and challenged the medical model of disability, in which disability is rooted in an individual body and results in multiple functional disadvantages which may be alleviated by medical, surgical, and pharmaceutical intervention. The social model of disability, which emerged out of the work disability activists and scholars, distinguishes between physical impairment and social and infrastructural disability, arguing that disability emerges out of the social barriers that function to make impairments disabling in both the built world and people's attitudes and behaviours. 19 Disability, then, is a product of the environment and can be alleviated by environmental and relationship changes and accommodations. 20 These interventions were extremely important from both a scholarly and an advocacy perspective, giving voice to disabled people to narrate their own experiences, needs, and visions for structural change. 21 Some recent approaches like Alison Kafer's "political/relational model of disability" have explored the interactions between body, environment, and culture, moving away from a strict social model toward a more hybrid approach that still fundamentally insists on rooting disability narratives in disabled experience and perspective. Kafer has troubled the strict distinction between impairment and disability, arguing for a greater attentiveness to chronic pain and mental illness as conditions that are both difficult and disabling. 22
These theoretical approaches to the body, diagnosis, and the ways in which they are embedded in broader social and cultural structures have all informed my theorization of this…category, or thing, or way of thinking about a category or a thing. (I need a pithy name and am currently taking suggestions, so please let me know if you have a good one.) As I approached this…thing, I was keenly aware of the long history of scholars and activists fighting for recognition that bodily experience and indeed the body itself only exists in conjunction with the world. A set of questions that seek to disaggregate the body from its context not only challenges these scholarly and practical perspectives, but might well undermine the very real gains made in disability activism and patient advocacy that pushed (and continue to push) against a medical system that has historically belittled, disregarded, and ignored patient voices. This pattern is particularly acute for people who have been marginalized, including women, disabled people, prisoners, people in poverty, and especially people of color (especially in the US and the Global North). 23 I am sensitive to both the intellectual and political imperative to insist on prioritizing lived experience and to maintain the messy and embedded relationship between bodies, brains, people, systems, environments, experiences, and structures.
Take that as a starting point.
And then, let us still ask: can there be face blindness without (many) faces? The question necessarily implies that a condition – face blindness – exists in some way independent of the world around it. That is to say that somewhere in the brain there is a condition that can somehow be defined even in a world in which it has no meaning. So to insist on examining the existence of, say, dyslexia absent reading, means that the brain's dyslexia – a condition deeply embedded in broader social structures in very specific ways, as we will see – seems to in some way disaggregate the brainbody from the wider world. It seems to at least raise the possibility of a stable brainbody condition that always is, even as it waits for a world to catch up to it and call it into being in a visible and meaningful way. It seems to at least acknowledge the possibility that reality, or at least some forms of it, can exist outside of its relationship to the world around it rather than cocreating it.
The body exists. It does things in the world. Classic texts like Barbara Duden's The Woman Beneath the Skin and Shigehisa Kuriyama's The Expressiveness of the Body have explored embodiment, medicine, the history of the body and the nature of the somatic in different contexts; in their own kind of looping effect, reading those texts changes how the reader experiences her own body and her own corporality. 24 More recent work like Sara Hendren's What the Body Can Do reframed the limits of the body as possibilities, looking at prosthetics that draw on tacit and somatic knowledge to meet the specific needs of particular people and particular bodies in navigating the world. 25 These particular bodies have specific needs that can absolutely be accommodated by drawing on the unique knowledge of the people who inhabit these bodies, and this knowledge and these needs very much emerge out of the combination of somatic, experiential, cultural, social and environmental conditions. These bodies do not exist or indeed pre-exist outside of the world, but they very much do exist within it, changing and being changed by it.
Social constructivism and medicalization are related to the kinds of examples I explore here, but are not quite the same thing. Medicalization pathologizes and classifies a given behaviour, condition, or way of being in the world, but that given behaviour existed prior to the imposition of a disease category or diagnosis. With something like self-starvation (for example), the introduction of "anorexia" and "anorexic" upon a person operated in conjunction with a given set of conditions or behaviors; the category changed (and, Hacking would argue, thus changed the behavior and the person doing it), but the manifestation or expression of starvation remained a common thread. 26 In my cases, the conditions of possibility for the behavior or way of being in the world are absent until the world itself changed. It's not a question of only classification changing one thing to another (or making it a thing at all), but of something becoming visible and identifiable when it once wasn't. The thing may have changed as a function of its emergence and categorization – indeed it almost certainly did – but even in its invisible or unidentifiable or unrecognizable state, it was, in some way, there.
But this isn't only about behavior (that may need a trigger to be expressed but whose possibility was always present) or the imposition of labels (constructed in conjunction with political and social contexts) but rather a stable biological, neurological, or somatic situation. Which is a kind of tricky claim to make, or at least investigate: can any aspect of bodily experience or existence be stable in this way? These embedded social perspectives on somaticism seem to ignore the world as-is, the brainbody that already is and has already been in the world, even if parts of it remain unknowable. The question does not disaggregate bodies and brains from the world, it just notes that the world can and has changed, and the parts of the brainbody that are knowable and are available to cocreate reality in any given moment can be in flux. Again: this is a thought experiment, and in some ways a series of unanswerable questions. But in asking, we can unearth those other forms of brainbody availability and in so doing, gesture toward what might also one day become known.
And also, maybe there is a way to answer the question, or at least begin to see what that might look like. Because it is about looking, seeing, and forms of mediation. These things, this group of only-sometimes-knowable-and-visible conditions, are all about media. Sight, vision, recognition, reading, speech: it is no accident that these are all functions of communication.
This is a story about bodies and medical systems, and thus it must be a story about communication: its possibilities, its limitations, and its mediation. The face, as I have argued elsewhere, is a medium: it communicates meaning both reflexively (this is who I am) and relationally (this is what I see in you.) As an index to the interior, it is imperfect – we cannot see the self on the face, but we can fashion ourselves in ways that have visual meaning to others. 27 That's the way it goes with media and meaning: we can produce it, but we can't control it. Everyone makes meaning in their own way. But we all make meaning from faces and bodies. There are signifiers rooted in racial hierarchies: skin color, for example, is attached to a lot of powerful assumptions and experiences. Some of these are deeply problematic and rooted in structural oppression with long histories, which is to say that judgements made about others based on their skin color are racist, and oppressive, and problematic, with very real consequences for the lives, safety, health, and dignity of, especially people of color. There are also extremely powerful meanings and associations that people have to their cultures and histories as represented (imperfectly) by skin color, racial and ethnic affiliation, and culture and community. These are complicated topics, but what I really want to say here is that given the legacies and current instantiations of racism, the meanings attached to skin color usually serve to reinforce structural oppression. But at the same time I do not want to evacuate the lived experience of identity affiliations, many of which are mobilized through racial categories, assigned or assumed.
So too with other bodily signifiers. Some have richer and more difficult narratives attached to them than others. Some change dramatically over time and across spaces. 28 Blue eyes may have saved a Jewish person's life under the Nazi regime; lighter eyes carry rather less life-and-death implications right now. An imperfect signifier, and a powerful one. And one that reveals that perhaps all such signifiers are imperfect: Jews can, of course have blue eyes. 29 And blue eyes do not make someone a more valuable person. But others make meaning out of blue eyes that has very real consequences in the world, or at least did at one point. There are countless examples spanning every possible spectrum, many of which feel deeply unpredictable: looking like Kim Kardashian (either naturally or surgically) can make someone a lot of money. 30 Which is to say, the faces and bodies we inhabit matter, in large part people – including the ones inhabiting these faces and bodies – make meaning from them. John Durham Peters took up the embeddedness of bodies, beings, environments, and entities as networked in his masterwork The Marvelous Clouds: Toward a Philosophy of Elemental Media. As Peters eloquently stated, "wherever data and world are managed, we find media." 31 Our bodies, he continued, are "technical systems as strange and mysterious as any devices we use." 32 For Peters, technical systems are a particular formulation that he explained in depth, but here it is useful to think with his framing around how we imagine the body's interactions work with everything. Peters situated the transition of media to being about human signals in the nineteenth century, as manifested in particular with the Spiritualist figure of the not-accidentally-named "medium" who was the conduit for the transmission and communication of messages (from the dead to the living.) 33 The twentieth century, Peters charted, became focused on mass media; he calls for an expansive vision of nature-as-media that has, he argued, persisted throughout these transitions. 34 Peters traced nature as media; here, I remind us that the body is nature. The body, then, is both a collection of data and a source of its production that finds meaning in its interaction with the world. 35 Like mass media that both produces and conveys messages – think in particular of journalism, journalists, and journalistic corporations who make the news even as they report the news – so too does the body itself receive, produce, and communicate information. 36 And thus, the body is media.
The body is a system. And, like most infrastructural systems, its workings are invisible…until they are not. Peters framed his call to make things visible in consonance with Lisa Parks' notion of Infrastructural Concealment, and classic STS work by Bowker and Starr on how systems obscure their own workings. 37 Sybille Krämer argued that communication is a process of partially revealing the hidden: the medium itself helps connect across disparate approaches, serving as the messenger. But communication can only ever be partial, and the messenger can only ever reveal the trace of the whole; it is up to the receiver to respond, even as the receiver acknowledges the limits to complete understanding. Communication, then, is an ethical relationship between the receiver and the other; that other may, as we have seen, be non-human, but it may well indeed be between two (or more) people with the body acting as medium. 38 The body then, is medium, messenger, and message that always necessarily requires an other; communication with and of the body is meaningful only in the context of a relationship, only in the presence of a receiver. Our bodies being meaningful in communication, as communication, as media, as conveyances to other entities (which can also include ourselves. The system is a fractured one.)
Bodies are, like all media, imperfect technologies of communication whose workings are obscure, variant, and manipulable. We can call the meanings derived from the body socially constructed, and they are; all meaning is. That in and of itself is almost meaningless. But the media of the human body have special status in that they are always and necessarily inhabited by people, living, dead, and otherwise. 39 We play a role in how we fashion and manipulate and infuse these media with signifiers, but we cannot control how they are understood or absorbed.
I am painting in very broad strokes here, but for the purposes of this essay it is useful to know that Actor-Network Theory (ANT) considers the ways that the human species (and its – our – bodies) have always been, in its terms, "networked," embedded within places, environments, other people, other species, other things. 40 There are strong resonances between ANT and Deleuze and Guttari's notion of assemblages, which builds on French philosophical theory to explore the intertwined arrangement of concepts and beings, and the meaning that emerges from that arrangement with respect to those specific entities. 41 These arrangements encompass the relationship between human and non-human entities; no one entity, human or otherwise, has a greater ontological status than any other at the outset. These organizations are temporary and always relational, such that meaning exists in the context of both how these entities are arranged and what that arrangement calls into being. And that arrangement can and will always shift. Numerous scholars operating in a justice and equity framework have built upon these theories: notable are applications by feminist geographers Rachel Colls and Rachel Slocum's queering of these ideas alongside and with Jasbir Puar's expansion of assemblage theory to explore how race, gender, sexuality (and, later, disability) are themselves encounters and events between entities rather than (stable) objective features of given bodies and beings. 42 Assemblages help us think through the meanings that emerge from the interactions of bodyworld alongside the meanings that are produced for body and for world as part of these interactions. To return to my original thought experiment, we can situate dyslexia as an assemblage, which would be consonant with the commitments of those who underscore the embeddedness of the body in its context along multiple perspectives. What is gained, however, by understanding the body itself as a medium? And what kind of thing, in this formulation, is reading? Or face blindness? Or super recognition? Or colorblindness?
And how can we find out?
Peters used to great effect the STS analysis of the way that the workings of many systems and processes are invisible until they break; in his formulation, the earth and all that it contains is the media infrastructure that is now ceasing to function. 43 And in that slow and steady demise, much that was present but unknown can now be seen and known even as it ceases to exist. I ask a related and opposite question: what of the systems and processes and infrastructures that are invisible because they are not (now) working together, but can be recognized if and only if the assemblage has multiple modalities of meaning? This formulation understands diagnoses rather differently; they are not in and of themselves good or bad – their valence is part of the production of meaning only in relation to the other modalities in which it exists. Or, to break that down further with my thought experiment: dyslexia is one assemblage of text and mind-body; another can be traditional reading, and another can be non-reading. Reading is a system that is visible in success rather than failure; dyslexia is not a distinct system of only failure, but one that is related to text and brainbody and visible with respect to text, to brainbody, to eyes, and, as Tom Campbell and Philip Kirby have both shown, to a co-produced system of capitalist value that places a premium on the translation and communication of written text to knowledge production. 44 Dyslexia, then, is many things: a category that is mobilized for support and services and explanations; an artefact of a changing system of capital and production; a – more recently – way to access alternative ways of learning and knowing; and, maybe in Peters' terms, a failure that makes the success explicit. 45 But can it also be something else? Or, more exactly, if we think dyslexia (and face blindness etc. etc.) as assemblages, what are their component parts? Are they the brainbody and the text, or can we get more granular? Is there something within the brainbody that is unique to dyslexia, in contrast to the components unique to other bodily assemblages?
Yes, I think, and if we can find a way to talk about those component parts, we can find a way to unlock other invisible systems that were once extant and are no longer, and perhaps think about potential systems that one day will be. And in so doing, we can take seriously the provocation that what medicine deems failure or diagnosis or disease is not necessarily so. Some systems become visible only when they break down. Yes. But others become visible only when something is built. This is of course obvious in some ways, and is predicted by the territorialization and deterritorialization processes articulated by Deleuze and Guattari around material forms and forms of content. 46 Except if we explicitly understand the body as a medium within this framework, what can we now know? And does that formulation lend insight into why the particular conditions in question are all themselves media assemblages that are explicitly relational and communicative? John Durham Peters would perhaps say no: his argument posited an expansive understanding of media that would take the question as a given. But I want to push further and see what, if we know this, what else we might be able to know.
I've been collecting examples. In this essay, we've been introduced to: dyslexia without reading; face blindness without many faces; super recognition without cameras; color blindness without mass production of textiles; stuttering without speech. Intolerances to food and drink, allergies, and other physiological reactions might also be applicable, but I put them in a different category for a few reasons: first of all, some of these are indeed both environmental and evolutionary; their connection to context is grounded, empirical, and in some cases quantifiable. We also know the answer to this question, because we have a before and after: before, say, a lactose-free community Asia consumed animal milk, and after, and what happens; or before and after alcohol was introduced to indigenous communities in North America, and after. 47 These are important histories grounded in colonialism, racism, medical manipulation and geopolitical warfare, and they provide models for how to tell stories that include military, geographic, cultural, and physiological history. For the health humanities, there is much to be gained from these approaches, and I urge more scholars to pursue these kinds of narratives. But they are less thought experiments and more key historical insights. Here, I'm after something related but different.
There are a few much-vaunted and highly repeated possible cases of face blindness dating back to antiquity. I'll caution here against retroactive diagnoses, in consonance with the very smart literature on the topic: we can certainly describe symptoms and experiences that seem to be common, like the struggle or failure to recognize faces. 48 We cannot say that this is a manifestation of the modern diagnosis of "prosopagnosia," which is a collection of highly contingent and contextual factors. Face recognition is a particularly complicated example because there are a lot of ways to be bad at recognizing faces beyond what we now call face blindness. 49 But, given that we think face blindness affects between 1-2% of the population to varying degrees, the relative lack of discussion of the condition seems a bit puzzling. There are reasons for this: as many face blind people have discussed in detail, it's one of those things that you don't know is a thing, so it can be hard to identify as even existing. Face blind people often articulate the enormous sense of relief they feel when their experiences are given a name: they are not stupid, they are not lazy, and they are not rude. 50 But in the absence of widespread discussion of a thing that is so tacit it is rarely named, they are also not aware that they have a condition. Until they are.
Face blindness seems like a counter-example to the idea that systems remain invisible until they break. People with face blindness manifest a kind of brokenness in a system that in others operates well and smoothly, and in others is visible if unnamed. But in fact, it's an extreme example of same – this system and others like it are so profoundly invisible and tacit that even when they don't work, it's hard to know that they in fact could and do. I theorize that this extremity is characteristic of my claims: it takes more than so-called brokenness to render these systems visible and identifiable. If it has always been, for someone, "broken," and for everyone else invisible, then it is hard for the system to be named or known, as indeed was the case for face blindness. Experiential narratives that communicate difference (I can't do this thing and you can) are part of the process, but that is not enough. Moments of "before and after," as in the case of people who developed prosopagnosia from injury or illness are part of the process, but that is not enough. A growing need for the workings of the system – in this case interaction with more people and more faces – is part of the process, but it is not enough.
Together, these things are almost enough. There also, of course, has to be concern for those for whom the system does not work. And it is there that the gap lies, and it is there that there have likely been people for whom systems work differently, and about whom we have never known.
A note here: I am using the term "broken" to borrow from the theoretical framework, but it is one of my arguments that such system anomalies (as it were) sometimes indicate a system that is not working, and sometimes indicate a system that works in different and even better ways. There is face blindness, but there is also super recognition. Each is equally invisible and unidentifiable, each requires a form of communicative mediation that works differently than the norm, and each is a system anomaly. One would perhaps be designated as broken. One (the super one) would not. My framework describes and encompasses both, and perhaps even argues that they are as similar as they are different. 51 Both invisible system anomalies. Each is valanced very differently.
Let's ground this further. Thucydides (460-400 BCE) wrote about those who "suffered from a total loss of memory…being unable to recognize their friends" and Seneca, who in 63 CE wrote about a slave who became blind but did not seem to know it. 52 Fast forward millennia to the nineteenth century, and we can collect a few more explicit examples. In the nineteenth century, Quaglino, Wigan, Hughlings-Jackson, and Charcot offer us further descriptions of things that seem a lot like this thing, alongside the first use of the term "face blindness" in a medical journal in 1899. 53 Now, we can ask why it took millennia, and some of that has to do with what studies of the mind and body were interested in, and what was recorded. Equally, it's possible that this thing simply wasn't relevant, because there weren't, aside from kings and generals who interacted with a great many people on a personal level, all that many people to see and know. (Though of course, who were people writing about besides kings and generals and religious figures? Who even could write besides them?) 54
(Again – really broad strokes here, people, and with apologies to all the historians of medicine and the mind sciences whose very delicate brush strokes may have gotten merged into my messy painting.) So we're at the end of the nineteenth century and we have a few more examples, and then in 1947 the thing gets clinically described by Joachim Bodamer. 55 And Bodamer's case is someone who has the acquired version of face blindness, so that person once recognized faces but no longer does. It takes another 20 years for a further example, and then yet another 20, and then…it becomes a thing. Now likely there were a lot of people experiencing the phenomenon described by this condition, but they did not have the language to express it as a difference, even as they lived its implications. It's easy enough – and not false – to note that the publicity received by Oliver Sacks' powerful writings describing his personal experiences as a face blind man, and his transition from as well as the concerted media strategy pursued by researchers of face blindness to attract research subjects, meant people could finally name it. 56 And the internet helped too. 57
But it wasn't just about the technology and the publicity. It was all these factors together that made this phenomenon knowable and describable, even as it had long – but not always – been relevant.
Is this also true of dyslexia? Tom Campbell has traced beautifully the interest by physicians in this category of condition (or disease, or diagnosis, or learning difference) as linked to a shift in how bodies are judged in the late nineteenth century. 58 As Philip Kirby has shown, the diagnostic category "word blindness" emerged in the late nineteenth century, but diagnosis, research, and services were galvanized in Britain the middle of the twentieth century with the establishment of institutions and frameworks devoted to dyslexia. Spurred by the Education Act of 1944, which required schooling through the age of 15, Britons were spending more years in school. The "eleven plus" examinations gave select students access to more elite state-funding secondary schools, placing further pressure on educational achievement and the corresponding professional opportunities. Once globally dominant, British manufacturing declined through the 1950s, but the professional classes expanded, raising the stakes for literacy and academic success. Reading began to matter much more. Failure to read began to matter much more. Effective reading was a system that was newly near-universal and deeply intertwined with government, business, educational structures, and access. Failure to effectively read was not the thing that exposed that system. 59 Some subset of people had been reading for a long, long time, and likely some subset of people had been struggling with it for just as long. But only in conjunction with lots of people reading, and reading being needed by lots of people to function, and it being something that people had to describe not being able to do, meant that the thing itself became visible. And "the thing itself" is both reading and its lack.
What about super recognition? What about claims that dyslexia allows people to access other ways of knowing and being? (Hendren and Garland-Thomson and Linton and Wendell would argue: with disability, it is always ever thus. 60 If only we make space for it. 61 If only we listen. If only we see.)
It's not an accident that the word "blindness" comes up so much. These latencies are intertwined with mediation; with the body as medium; with the mediated relationship between the body and technologies of communication; with the systems that encompass all of these pieces. "Word blindness" requires words; it requires sight; it requires a system that makes sense of the words through sight; it requires a breakdown of the systems decoding the words by sight. "Face blindness" requires faces; it requires sight; it requires a system that makes sense of the faces through sight; it requires a breakdown of the systems decoding the faces by sight.
We know that media both produce and convey messages, and that systems help. Do bodies make the thing? Do books make reading? Do bodies make reading? Bodies and books make reading: that's the system. The book is the medium, but so is the body. These are about the interactions of two media to make meaning, and what we are interested in is interruptions to those interactions that make meaning in different ways. Dyslexia can't exist without reading, but the body as medium still exists, and so does a brain that mediates the world. The latencies that get called into being in this way are always mediated, because they are a part of the system. It doesn't matter if dyslexia was in the brain before or without or after reading. What matters is how we understand it. Will it be expressed another way?62
But people made words. People did not make faces. These are not the same. Maybe they are the same enough. They both require a system breakdown. There was once, as we have discussed, a time when there was no reading. There was once – not long ago, really – a time when reading mattered less. There was never a time with no faces, although there was a time when faces mattered less. There were fewer of them – empirically, and also in any given person's life. Only people who saw lots of people needed to be able to recognize them. We can only posit that for most, struggling to recognize faces really didn't matter much. And, some might say, in a world of masking, everyone is somewhat face blind. In the world of zoom, faces all come with nametags. Face recognition is far more temporary and contingent than we ever imagined.
What else might one day cease to be called into being?
These latencies are not all diseases, and they are not just diseases or disabilities. If we think them together, putting super recognition and face blindness and dyslexia and color blindness in the same category, we can see the ways that they can help people see that which is to others obscured. This is not the same as narratives that situate, say, mental illness as a key to creative genius or even – though it's related – to the advantages that can come from a non-neurotypical way of engaging the world. 63 Philip Kirby has chronicled cultural representations around dyslexia as a kind of gift, a way of knowing that only a limited few can access. He cited in particular the Percy Jackson young adult novels, in which the protagonist's dyslexia is both a godly inheritance and a tool that helps Jackson in fulfilling his destiny. The author, Rick Riordan, began the series in part as a way to offer his dyslexic son a different way of understanding his learning difference. 64 It's a powerful adjustment, and also a fictional one: while many kids struggling to read will see themselves in the protagonist's scholastic experiences, few of them are also gods.
The neuroscience research often locates varies compensations and adjustments in non-neurotypical expressions: people with various synesthesias may report, for example, deficits in other arenas. 65 As I've noted elsewhere, in order to identify such deficits or compensations, researchers have to be interested in looking for them, which is indexed to whether they consider a certain condition to be a lack or a benefit; there has been little investigation in the challenges that might accompany super recognition, for example, and there has been correspondingly little interest in the adaptations and compensations that face blind people may exhibit. 66
Faceblindness and dyslexia are not brokenness, and super recognition is not hyper fixedness, but they are ways of accessing the world and its media that work differently. But the world, as we know and indeed have witnessed, changes. What once might have been a way of working that didn't work may soon be the best way to work. When the world changes, a system whose operations were inefficient in context might become more effective as contexts change. And then the system itself, must, through this reevaluation and its looping effects, change. Rethinking these mediated differences with the body as media opens up the possibility in very grounded ways that these knowledges might in other contexts, with other receivers around other assemblages, be the better or at least more efficient or maybe even more invisible system.
These systems that we rely on and operate within as though they were the best possible systems are not. We know this. We know structural racism and sexism and ableism, themselves not a bug but a feature of these very systems. But – and here I do borrow from the broken metaphor – it may take someone for whom the system's failures have been personal and manifest to imagine otherwise. I think here of Octavia Butler's stunning Xenogenesis trilogy, which, amongst other innovations, finds in cancer a talent rather than a disease. In her vision of the world to-be, cancer offers the potential for cell regeneration and growth, which is of enormous value to species looking to cure injury, suture illness, and occupy new ways of being in the universe. 67 The protagonist is specifically selected for this talent that she feared would be her death sentence – and it may well have been in her context. The novels change the context. Rapid cell growth becomes salvation. Cancer becomes salvation.
But the cancer was already there. The systems changed.
The discourses around the social construction of disease, medicalization, the sick role, and the different models of disability all draw on the meanings that bodies communicate and the various pressures and powers that come to bear on how we make sense of and derive those meanings. They all rightly insist that disease, illness, conditions, disability, and diagnoses are negotiations between these perceived meanings, medical power structures, social, cultural, and political developments, and historical assumptions and traditions. There is a way to make these claims that evacuate the body or render its corporeal form unnecessary. There is also a way to make these claims that has sympathy with lived experience and takes it into account. 68 There are tensions here: Riva Lehrer wrote movingly about feeling liberated to discuss her pain within the Disability community, challenging a tradition that was concerned that acknowledgment of pain would undermine the argument that Disability is not inherently a disadvantage and is only rendered thus by the lack of social and environmental accommodation. 69 Two things can be true: pain is terrible, and Disability need not be fundamentally disabling. 70
Is there a meaningful difference between visible conditions of the body – the number of limbs, eye color, various measurements – and ones that cannot be seen or felt without medical intervention or particular experiences, like allergies, intolerances, heart conditions? What about temporary or transient conditions that mark themselves upon the body like hives or rashes that may or may not be attached to specific diseases like chickenpox or eczema? Are these equally the results of social construction and broader meaning making? Perhaps eye color is invisible or unidentifiable or meaningless under certain conditions, and thus cannot be known or experienced, much like certain disease categories. Which is a different way of saying that they only exist in context, like all somatic categories, diagnostic, pathological, or otherwise. Which is a different way of saying: this is not about good or bad, and even more so: our categories of disability and ability are themselves deeply contingent and highly mediated.
A thought experiment is only as nuanced as the meaning infused in the categories themselves. Comparing neurotypical or non-disabled ways of interacting with the world to neurodivergent or disabled ways of being often takes a deeply reductive position as its starting point, failing to account for the rich and highly varied lived experience of disability. Here, I take seriously the complex interactions between personal experience, medical and diagnostic infrastructure, and – centrally – history itself as an actor in the mediation and categorization of disability. When we frame conditions such as dyslexia and face blindness as historically mediated and experienced phenomena, we open greater possibility of what was once known and is no longer, and, importantly, what can one day be known that is not now. The category of dyslexia tends to be indexed primarily to text and reading; if we frame it as a complex mediated category that includes not just the processing but the production of knowledge, we have a great framework to understand, for example, the role it may play in auditory processing, or spatial arrangements, which has implications for navigating space. 71 We can turn to first-person accounts of, for example, faceblind people or dyslexic people to learn about both the experience of navigating the world with modes of compensation and accommodation and about what and how people know. This essay is both a thought experiment but also a call for an expanded epistemology informed by an understanding of mediated neurodivergence as a category of knowledge production itself. In a non-literate culture or in a context of few face-to-face interactions, the implications of disability and face blindness will manifest differently, and likely not as disabilities. This speaks to both the social contingency of disability but also our own limitations about thinking broadly about ways of knowing and ways of being.
What can faceblind people know? What can they see? This is a function of what there is to see, of course, and how it is seen. The brainbody works in conjunction with the structures through mediation to produce specific forms of knowledge. That is only meaningful if that knowledge can be communicated, and it is only valuable if that knowledge has value. (In this case, by the way, faceblind people tend to be enormously skilled at reading body language, gait, facial expressions, voices. They tend to have highly diverse groups of friends and prioritize unusual appearance; these are adaptations, but they are also important skills and, one could argue, ethical frameworks. 72 Some might say: so too of color blindness. It doesn't much matter now, but once those who were color blind were actually able to see minute variations that helped enormously with hunting. 73 And may one day again help with something else. We don't know yet, but that's not the same as it not being so.