Home Signs : An Ethnography of Life beyond and beside Language 9780226831251, 9780226831268, 9780226831244

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Home Signs

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Home Signs ...

An Ethnography of Life beyond and beside Language

Joshua O. Reno

The University of Chicago Press Chicago and London

The University of Chicago Press, Chicago 60637 The University of Chicago Press, Ltd., London © 2024 by The University of Chicago All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations in critical articles and reviews. For more information, contact the University of Chicago Press, 1427 E. 60th St., Chicago, IL 60637. Published 2024 Printed in the United States of America 33 32 31 30 29 28 27 26 25 24   1 2 3 4 5 ISBN-­13: 978-­0-­226-­83124-­4 (cloth) ISBN-­13: 978-­0-­226-­83126-­8 (paper) ISBN-­13: 978-­0-­226-­83125-­1 (e-­book) DOI: https://​doi​.org/​10​.7208/​chicago/​9780226831251​.001​.0001 Library of Congress Cataloging-in-Publication Data Names: Reno, Joshua, author. Title: Home signs : an ethnography of life beyond and beside language / Joshua O. Reno. Description: Chicago : The University of Chicago Press, 2024. | Includes bibliographical references and index. Identifiers: LCCN 2023029693 | ISBN 9780226831244 (cloth) | ISBN 9780226831268 (paperback) | ISBN 9780226831251 (ebook) Subjects: LCSH: Nonverbal communication. | Children with disabilities. | Communication. Classification: LCC P99.5 .R46 2024 | DDC 302.2/22—dc23/eng/20230816 LC record available at https://lccn.loc.gov/2023029693 ♾ This paper meets the requirements of ANSI/NISO Z39.48-­1992 (Permanence of Paper).

This book is dedicated to Charlie and Jeanne, again lum

Contents

Preface: Writing in the Wan Chum Genre  ix

Introduction 1 Chapter One Aggressive Stance .  25 Chapter Two A Ticklish Subject .  57 Chapter Three Technically Speaking .  87 Chapter Four Significant Others .  115 Chapter Five Cacas Ergo Sum .  143 Mmmmmm .  173 Acknowledgments  189 Notes  193 Bibliography  217 Index  235

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Writing in the Wan Chum Genre

This book grew out of my relationship with my teenage son, Charlie, who cannot speak. When I began, I felt as though I were embarking all alone on a literary quest, one that would make people finally realize that assumptions about language are damaging and that living beyond and beside language is possible and meaningful. But it turns out that I am not alone. Many people have written about relatives who have been diagnosed with disabilities of various kinds, especially their children. There now exists a minor subgenre dedicated to it, though it is rarely called out as such.1 I admire these writings, but they also leave me somewhat unsettled. Imagine my surprise to find that I am not even the first Josh to write about their disabled child! While I was completing this book, in fact, Aaron Jackson and Thomas Pearson were publishing their own wonderful ethnographies with heartfelt, personal reflections on unexpectedly becoming fathers of disabled children. In a sense my very desire to represent Charlie, to stand in for him, to speak because he cannot, was anticipated in advance. This book was preceded by an entire club of mostly straight white people like me who were moved to do the exact same thing. A club that I, the latest member, did not even realize existed. For the last decade it has made sense for me to be the primary caregiver for Charlie in our household. As a college professor, I have flexible work hours and summers off, whereas my partner Jeanne, a brilliant engineer, works as the head of environment, health, and safety at a tungsten manufacturing facility in Pennsylvania, more than an hour away from our home. She would like to be at home more. Despite loving her job, she always carries some lingering guilt that it makes more sense for me to be the one to get Charlie up in the morning, prepare and clean up after his meals, help him with toileting, take him to medical appointments when necessary, meet with his educators and carers, put him to bed and co-­sleep with him (there was a time when that was the only way he would sleep). But my experiences with Charlie and my (apparently predictable) desire to tell others about them are not only about my social class or the classes I teach. What I hope ix

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to add to this existing literature-­without-­a-­name is more reflexive attention to my own relative position of privilege. Most obviously, I am writing about Charlie, and Charlie cannot write a thing. This places some unique ethical demands on me to take additional care with what I write and how. In keeping with critical standpoint theory and feminist auto-­ethnography, I want to do more in this book than make some arguments and tell some stories: I want to critique, to trouble, to poke some holes in the way people usually argue and tell stories about language and communication.2 This process starts with asking some uncomfortable questions: why am “I” the one writing this book? and why did different, but also typically privileged, often cis-­het, white parents all think to do something similar? Women, queer people, and people of color have written important texts about children diagnosed with disabilities, and I will draw upon their insights in what follows. But some writers are more like me, Jackson, and Pearson. The three of us, and many academics in general, for that matter, could be glossed as privileged wan chums, that is, as white, able-­bodied, neurotypical, cisgender, heterosexual, upper-­middle-­class men.3 While many factors motivate people who write personal accounts of disability, I suspect some of us share a compulsion that is symptomatic of the considerable freedom we otherwise enjoy. To be clear, I have not always been all of these things and might not “pass” as all of them all the time, and I suspect the same could be said for some of the authors I am alluding to. No one’s “wan-­chum-­ness” is fixed. In the flow and drama of everyday life, no single identity or collection of identifications remains stable over time.4 But whether anyone is or isn’t a pure wan chum is less important, for my purposes, than the generic fact that some writers about disability do not have their identities, their often privileged perspectives, on display when they do so. As I write this, those around me and the institutions I regularly engage with clock me as a wan chum. I pass as one, in a sense, and that recognition matters. Wan-­chum-­ ness gives the impression precisely of not committing to a marked identity, not situating oneself in any particular way, of assuming the generic stance of a view from nowhere. This is what Donna Haraway calls the “god trick” of science and social science.5 It is as if wan chums don’t have bodies, perspectives, power. By calling myself out as a wan chum, I am trying to challenge this tendency, to playfully provincialize that all-­too-­familiar stance that is not open to everyone yet claims to speak for all. Nobody is normal. Those are the wise words of a fellow parent-­of-­a-­child-­ diagnosed-­with-­a-­disability, wan chum, and anthropologist, Roy Grinker.6 But in that same book he also argues that differences in power and privilege allow some of us to appear more normal than others. In anglophone

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academic circles, people like Grinker and me are more likely to appear “normal,” and have benefited from that social fact. While I cannot speak for what compelled Grinker to write about his own child diagnosed with autism, I suspect it is similar to what compels me, Jackson, and Pearson. In those moments when I am most affected by being a wan chum, in this more fluid sense, I am continually frustrated that my own choices should be reduced as a result of my son’s being limited. As Pearson, father of a child with Down syndrome, admits, with a sense of shame, early on he did not want his child to live. As Jackson, fellow father of a nonverbal child, puts it, “my son’s body became a curious spectacle in even the most prosaic spaces of daily life, and I felt this palpably as if it were my own . . . The truth is, my son’s disabilities revealed a world that had been secretly nestled inside the one I had so blithely inhabited.”7 That is one way to account for the shared compulsion some wan chums appear to have, to stand in and stand up for our children who have been diagnosed with disabilities. It is partly a knee-­ jerk reaction to privileged expectations having been dashed.8 Since “wan chum” can also literally mean “weak buddy” in English, it has the added benefit of characterizing the tension at the heart of this book. I am Charlie’s wan chum, his pathetic companion throughout his life, trying and failing to understand his desires and difficulties, to fight for him despite my own bad habits and character flaws. I care for and about him, but at the same time I am emotionally and psychologically fragile, making me an unreliable carer (and narrator). I am weakened by his suffering and struggle, and also by a sense of bitter entitlement. “I don’t deserve this” is something I am ashamed to have thought and continue to think about his fate and my own. That thought leads to others: I don’t deserve to spend so many nights cleaning piss and shit off him, me, the place we live. Fuck this, fuck him, fuck me for thinking that, and fuck you for having it easier than either of us. I am not proud of having wan chum thoughts like these, not least because they are not true (plenty of people have harder lives than we have, and cleaning does not take up that much of my time). But I do have these intrusive thoughts. So it can be challenging at times for me to represent my son’s life or mine as livable and meaningful. Unspoken but implicit in my nihilistic self-­pity, rage, and frustration is the notion that I deserve something more, that things should have worked out differently for me. Like me, Charlie is also largely identified as white and male by others, which I think compounds my sense of unfairness—­he should also have it easier.9 These are wan chum sentiments and they are part of me, stemming from my relative position of entitled privilege. They always potentially contaminate these words, the ones I’m writing now, and my actions as Charlie’s companion and carer.

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At its best, auto-­ethnography helps to situate the positionality and perspective of a specific and partial “I.” I use auto-­ethnographic reflections in this way throughout this book. My hope is that as a result life with Charlie is better represented—­not his voice (which is impossible to mediate or channel successfully) nor simply mine (which is impossible to silence or subvert completely). Some auto-­ethnography can be used to foreground the conditions of a text’s production by using a different footing.10 This might include ironic detachment, critical parody, or poetic playfulness, all of which represent a shift in alignment from the overly sincere commitment to reflexive writing as a method. These other types of footing involve aligning with a persona one is adopting (in my case, my “self ” as caregiver), in a way that draws attention to and potentially undercuts the objectifying project itself. Shifts in footing like this are not only textual, that is, part of the text, but also call attention to the text itself, are about the text or metatextual.11 One example of such a footing is what literary critic Alastair Fowler calls a poioumenon, a sort of metastory that describes the story’s own ­construction.12 Australian novelist Al Campbell does this in a piece for the Guardian online, where she momentarily shifts attention from writing about her nonverbal child, Rupert, to writing about how caring for him shapes the process of writing: “some autistic people struggle with sleep; my Rupert certainly does. In fact, as I write this essay, I’ve been awake since 2:34am as that is when Rupert needed to start the day. This is not unusual and is part of who we are.”13 Here is an example true to my own life, following Campbell, of a change in footing and voice toward a more poetic, auto-­ ethnographic interruption, taking the form of a poioumenon: As I write this, it is 10:24 pm on August 10th, 2018. Charlie is downstairs singing to himself in wordless, high-­pitched hums while he watches videos on his iPad. Jeanne is in bed, two floors up, hopefully resting before her early morning wake up and long commute to work. I am at a desk in our dining room, in between them, typing this. The air conditioner is located in the wall between us and partly drowns out his noises, meaning both that Jeanne won’t be disturbed by them and I might miss an important signal to get up and check on our son. Too much silence makes me nervous. I need to get him to sit on the toilet since it has been forty-­five minutes since he last tried. He will probably refuse. When he was younger I could get him up quite easily, but this gets harder the older and bigger he gets. At this point, he’s twelve, just two inches shorter than me and a good thirty to forty pounds heavier. The last time I made him go, I had to tip forward the rocking chair that he was sitting in and spill him out of it. I feel guilty that I am helping

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some unknown reader to navigate a preface that they probably will skim anyway, when I should be tending to my son. But I am also anxious, because last night he soiled himself with a loose bowel movement when we were similarly separated, and I got so frustrated I might have disturbed Jeanne’s rest. So I am concerned what I will find when I stop writing and finally go to check on him. I am worried I will wake my wife and I am worried that I will need to clean shit off yet another surface in our apartment. It’s now 10:29. I had to coax him off the couch and guide him to the bathroom, but he was basically compliant. As I feared, he had already peed a bit in his adult-­size pull-­up, so I had to throw it away. I told him “good job” anyhow in the most supportive, quietest voice I could muster, for trying to go (but not as expressively as I would have done had he been dry). I’ll reset the timer on my phone for forty minutes once he is done and hope for the best. Right now he just wants me to leave him alone, not to make demands or act disappointed.

That interlude is related to the main text in two ways. First, it is directly related as the unspoken social and material setting that makes up the ordinarily concealed background conditions for my writing practice. The other text (that is, the one you are now reading) is produced in a different tone, one that distracts from the fact that, as I write this right now, I am a person with a body, situated in a place with social obligations, just as you are a person with a body in a place and your own obligations as you read it. Writing is always situated, always embodied. Consider how author Eli Clare, who has cerebral palsy, characterizes writing as a bodily practice: “The faster I try to write, the more my pen slides out of control, muscles spasm, then contract trying to stop the tremors, my shoulder and upper arm growing painfully tight.”14 His struggle with the bodily labor of writing is important to note because it is not reflected in the form of the book as a mass-­produced commodity. It is not as if Clare’s prose becomes harder to read, more erratic, from chapter to chapter, nor should it be. No matter the writer, the labor they undertake is similarly embodied, whether it involves being sweaty, famished, exhausted, euphoric, hungover . . . Any affective state can enhance or limit what, why, and how writing happens.15 Despite this change in footing “back” to the main text, I never stopped being a body in a place or a self in a familial situation, I just stopped calling attention to it. He is still on the toilet and it’s 10:35. I check on him, and he sends me away again, taking my hand and gently pushing it in the direction

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from whence I came, a “home sign” that we tend to think is his way of saying “go.” I feel relieved I can leave him for now but also guilty for feeling that way. I am a bad parent, I think. And now I’ve written it.

When I write sentences like the one you are now reading (the less personal, less poetic kind), I do not directly reflect on the fact that my son is beside me or in the next room or being cared for temporarily by someone else in another place entirely and that, therefore, any writing I do “about” him is also woven into how they and I practically care “for” and share a world with him. It is important to maintain this tension, the tension of a book simultaneously about and for Charlie, and the poioumenon-­like auto-­ethnographic interruptions help accomplish this. This is important because he is a person at risk of oppression as a result of his severe disability. So talking about his struggles and self in a more concrete, evocative way is meant to highlight the representational imbalance of depicting someone who is literally incapable of speaking for himself. But there is a paradox here: how can I claim to be representing “Charlie” at all, when I am talking so much about my own standpoint, my own ­perspective? What if I were to write the above passage in a way that excluded my own perspective and position entirely? It might look more like this: Many children on the autism spectrum struggle to learn toileting behaviors, even very late in life. In order to teach Charles Reno these skills, his carers attempt to encourage a habit to sit on the toilet at regular intervals. Otherwise he will soil the adult pull-­up he always wears. Timekeeping is used for this purpose so that every thirty or forty minutes he is encouraged through simple nonverbal and verbal cues to use the toilet. Typically, it is necessary to lead him to the bathroom by the hand. Furthermore, Charles also needs to improve on cleaning and dressing himself and needs one-­to-­one assistance to do these things, or verbal and nonverbal reminders. Sometimes he resists and sometimes complies.

This account about “Charles Reno” conveys much of the same information as the one about “Charlie,” above. It is not wrong, exactly. In tone and referential content, it closely resembles the kinds of statements that are routinely made and circulated on official forms signed by Charlie’s carers and educators so they can be submitted to the school district and to the state. Those statements remove all context and all sense of place and time, embodied affect, and activity, as well as the stakes of the relationships involved. In so doing, they certainly sound more official and objective—­that is why state institutions prefer them—­but they also run the risk of helping

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the reader to forget that Charlie is never the one authoring any account of his behavior. Caregiving relations involve power dynamics, perhaps more so than most. As bell hooks points out, “while this circumstance of dependency [associated with caregiving] is not necessarily one that leads to domination, it lends itself to the enactment of a social drama wherein domination could easily occur as a means of exercising and maintaining control.”16 One exercise of power in my caregiving relations, rooted in my wan chum grievances, is how I sometimes feel bitter about doing my share of the caregiving. As a result, I occasionally characterize Charlie as lacking abilities and making life difficult. What he does and who he is fall to one side when the focus is only on who he isn’t. This can be expressed in a basic antinomy: Who Charlie Is Not Having been diagnosed with Autism Spectrum Disorder (ASD) means different things for different people. For Charlie, being diagnosed on the spectrum means he is completely alingual, does not sign with formal gestures (like ASL) or talk or seem to understand much of what others say. When Jeanne and I decided to conceive, it never occurred to us that after his first year we would not hear our child talk; that he would not have friends he would play with outside of orchestrated classroom settings; that he would be unable to bathe alone, brush his teeth, and use the bathroom into puberty (and potentially long after); that as he grew up, he would not date or have romantic partners, go to college, or one day have a home, children, a career of his own. We knew these were all possibilities that might go more or less unfulfilled, as they do for everyone ever born. We did not know they would be seemingly foreclosed entirely at a young age by his lack of formal language.17 Who Charlie Is Like Jeanne and me, Charlie is a white, American citizen and resident of New York state, though we all spent time in England together when he was young. We refer to Charlie as “he” and “him,” but truly have no idea what gender means for “him.” Like some of our relatives, but not us, Charlie is tall and heavy for his age, about five foot nine and well over 250 pounds. He is technically obese, though this does not seem to cause him the shame, embarrassment, and concern that it can cause us. We are not sure he is ever embarrassed, in all honesty, and he typically brims with a kind of blissful self-­confidence. He has soulful, hazel eyes

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and a slight space between his front two teeth that appears whenever he smiles wide, which he does when his parents come home after work, when he sees ocean waves crashing on a beach, birds taking off in flight, or wind blowing through trees. He loves dancing, watching music and most sports, being tickled, chasing and being chased. He has my wife’s dark, wavy brown hair, usually cut short; he doesn’t normally sit still for haircuts (typically this consists of chasing him with scissors and clippers for hours), so we always make it as short as possible, then let it grow as long as possible before going through the ordeal again. As I write this his hair is long, down to his shoulders. Since hitting puberty, he is growing wisps of curly hair along his upper lip and chin, forming a chain to his sideburns. Very rarely, normally with breaks in routine, he gets upset and lashes out in what is known as a “meltdown.” Though nonverbal, he is not always silent. He will squeal with glee when happy and moan in a low tone when distressed. One sound, which he routinely makes, we hear as “diggum.” Usually it comes out as a stream of sounds: “diggumumumgum.” At home, Charlie often alternates between being relaxed, happy, and overjoyed. His dark eyebrows rise and stick in place when he is amused, which we’ve taken to calling “eye diggums.”

In this book, I try to focus on the latter perspective (who Charlie is) as it relates to the importance of nonverbal communication. I admittedly have trouble doing so, and this tension haunts my attempts to faithfully represent my life and his. In line with longstanding and established insights in feminist, queer, and disability scholarship, I have found that the more I think of the other people involved in Charlie’s life—­caregivers, family members, my wife—­the better I can maintain an image of who Charlie really is, and it is when I am trapped in my own, wan chum perspective that I only see him as limited and worry about his present and future, as well as mine.

A Note on Humaning and Outhumaning Rhetoric I am not alone in my difficulties. Scholars who study disability point out that disabilities are often represented in terms of lack, absence, abjection, as if people diagnosed with them are primarily defined by having an undesirable existence, shadows of a real life.18 It is early December 2022, Charlie is now sixteen, and I am dutifully attending a department holiday party at Binghamton University. Sipping white wine, having just finished my turn holding a junior

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colleague’s new infant child, I am feeling sociable and cheerful, and end up in a conversation with the partner of another faculty member. We get to talking about buying houses, and they are surprised to learn that Jeanne and I do not own one. What they find even more shocking is that we aren’t sure we ever want to. They press me about that so I give the stock answer we’ve given many times: “Our son is disabled. We have to plan for three retirements and he’s going to retire at twenty-­one.” I say this line with a slight grin as I always do, to try to make clear that we don’t see this as a terrible tragedy, just a fact of life. “He’ll probably need lifelong care and we don’t know whether the best option for him will be in this area, so it is hard to settle down.” “You never know,” they respond calmly, “he might not live that long.” My first thought was that they were making some kind of incredibly cruel joke, but their expression did not change, it was an apparently sincere suggestion: don’t wait to buy a house on Charlie’s account, he might die young. Dropped in conversation with a stranger without a second thought, some cold and casual eugenic logic. I was in utter shock, excused myself from the table in a haze, said a few words of goodbye to other people, and abruptly left the party. I spent that evening searching what I had said to that person or how I had said it for something, anything that might have invited my interlocutor to conclude that we see Charlie as a burden, as unworthy of life, as an obstruction to our happiness, rather than as someone we love dearly, who lives life better than anyone, and deserves to.19

Most people would categorize Charlie as “severely” or “profoundly” disabled, primarily because of his lack of language skills. Both countries we have lived in so far, England and the United States, gave us a version of this assessment. They look at Charlie in terms of what he can’t and won’t do. Things are not much better among anthropologists, who, with a few notable exceptions, have tended to ignore disability altogether, and cognitive or intellectual and developmental disability most of all.20 Even when they do intervene in these discussions, moreover, scholars may reproduce problematic distinctions and recast disability as the absence of a good life or of being fully human. The ability to use language, in particular, has long been held up as a uniquely human achievement. When people do not use words, it raises troubling questions about their humanity. Anthropologist Jani Klotz demonstrates this in a review of earlier studies of people diagnosed with cognitive disabilities in anthropology, specifically by wan chums Robert Edgerton and Craig MacAndrew: “By associating a ‘lack of language skills’ with ‘impoverished cultural and social behaviour’

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[Edgerton and MacAndrew] consequently disregarded the social and symbolic nature of profoundly intellectually disabled people’s forms of expression, and ignored the means through which they meaningfully communicate and engage with others.”21 Here Klotz admonishes fellow scholars for assuming that lacking linguistic ability necessarily means being somehow less cultural and social. And importantly, for the purposes of this book, she clearly emphasizes that meaningful communication is possible regardless of diagnosed impairments. But this has even deeper implications according to Klotz, especially for anthropology. “In accordance with the dominant Western presumption that meaningful human sociality is dependent upon language, reason and intelligence . . . Edgerton and MacAndrew’s interpretation subsequently relegated profoundly intellectually disabled people to a status as ‘less human than some infra-­human species.’”22 As Klotz makes clear, just because social scientists think to write about people diagnosed with “severe” cognitive disabilities does not mean that they are representing them as having livable existences. For her this seems to mean distinctly human lives, that is, “social and symbolic.” Like most anthropologists, Klotz tends to hold the measure of a truly human life, in part, as having something to do with symbolic communication and culture more broadly. Part of what she objects to is the tendency to disregard the “symbolic nature of profoundly intellectually disabled people.” There is something about symbolism, in other words, that, for Klotz—­and arguably, for most if not all contemporary anthropologists—­is distinctly human. As a result, any denial of symbolic ability leads one on a path of rendering people as somehow inhuman. I respect Klotz’s position here, and value the critique she puts forward, but it still gives me pause. It seems to me to involve some common circular reasoning about “the human” that goes something like this: Symbol use and culture make humans different from animals. So, without them we are only animals. People diagnosed with intellectual and developmental disabilities are human. So people with these disabilities must use symbols and have culture for them to be recognized and treated differently from animals. Some people go further and complete the circle: The fact that even people with intellectual and developmental disabilities use symbols and have culture shows how deeply entwined symbols and culture are in being human and not being animals.

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The problem here is with the binary, either/or thinking that tends to accompany discussing abstract categories such as culture/nature and human/­ animal. Klotz is surely right to worry that choosing the wrong side in this tug of war can result and has resulted in histories of abuse and oppression. Klotz’s concerns are echoed by influential disability studies scholar Eva Kittay, who describes the difficulty of following philosophical debates in which people like her daughter, who has been diagnosed with a cognitive disability, are rendered unpersons through routine comparisons with nonhuman animals.23 Rather than push for a recognition of all people as having symbolic capacity, my alternative approach starts by acknowledging that there is more to people than symbols and culture. I mention nonhuman animals throughout this book not to equate them to people like my son, to flatten all differences between them, but because of the unavoidable fact that communication beyond and beside language is not exclusive to our species (see the introduction, below). A lot of wan chum writing seeks to address precisely this problem of disableist representation (of disability as equivalent to suffering, lack, or inhumanity). One example is Paul Collins, author of Not Even Wrong, a memoir about caring for a child diagnosed on the autism spectrum. Collins provides an impressively revealing and honest account of his struggles to come to terms with the way his child is different. This leads him to make some combined personal and philosophical revelations about human beings in general. “They are us,” Collins says, “and to understand them is to begin to understand what it means to be human.”24 That is certainly an improvement upon the depictions that Klotz critiques but, as the exact inverse, it has some problematic implications as well. Cultural theorist Stuart Murray, for one, is troubled by rhetoric that holds encounters with disabled difference as revealing “what it means to be human,” which somehow both others and universalizes disability at the same time. Part of the issue is grammar. Collins’s statement “they are us” perhaps unintentionally reaffirms or presupposes a “they” and an “us,” as if there existed stable and straightforward lines of separation between these groupings. Moreover, approaches like this—­what Murray calls “outhumaning” rhetoric—­ignore that the category of “the human” has been used throughout history to divide up and rank abilities and bodies in pernicious ways, which Klotz alludes to. According to Murray, Collins is good at showing that “those with autism ‘are us’ and form the platform for an ‘understanding’ of nonautisic humanity,” in the process moving “beyond core ideas of humanity to suggest wider possibilities.”25 At the same time, there are risks whenever people speak in terms of who is more or less human, the most human, or the best example of the human, as a general tactic.

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Outhumaning rhetoric can be tempting, all the same. So, for instance, one strategy I thought about employing during various stages of this book would be to say that Charlie has his own language, which would mean ­redefining language in a way that includes how he communicates. Or I could say that since he is human (in line with Klotz), of course he has a symbolic, cultural mind, even if it is hard to tell for sure that this is the case without the use of words. In that case, I would be clinging to an essentialist position, no matter the evidence: Charlie must have a capacity for symbolic thought because he is a member of the human species and therefore must do generically human things that are exclusively human. That might be seen as generous interpretations of who Charlie is. But I think it actually avoids the harder work of empirically documenting what it is he does do, which is significant and signifying but is not the same thing as what many mean by “language.” Or I could go in the opposite direction and say that how he communicates may not be recognizably symbolic and cultural (that is more or less what I do in what follows), but then go on to state that it is just as good as or even better than formal language. Maybe the way he communicates is nonsymbolic but, for that very reason, also more immediate, clear, and affecting as a mode of expression. But engaging with him like this, with the kind of communication he does do, is not always easy, affecting, or personal. Sometimes, if I am honest, it is downright alienating. We do not always know what he means or feel closer to him as a result. My method in this book may not be as comforting as talking constantly about Charlie’s inviolable humanity. Instead, it draws attention to the slipperiness around ideas of human exceptionalism, of what makes “us” feel superior to and absolutely distinct from “them,” whether bad humans or nonhuman animals. As Faye Ginsburg and Rayna Rapp, Matthew Wolf-­Meyer, and others argue, taking disability seriously means addressing underlying assumptions about humanity: how we differ from one another and from nonhuman things and beings, and what it means to live well and share our lives.26 For this reason, Wolf-­Meyer in particular argues that consideration of disability can add to the critical literature known as posthumanism. There are many ways to characterize posthumanism.27 My interest in these approaches is more in line with Jacques Derrida’s late writing on the question of the animal.28 For Derrida, interrogating the divide between human and animal is “less a matter of asking whether one has the right to refuse the animal such and such a power . . . than of asking whether what calls itself human has the right to rigorously attribute to man . . . what he refuses the animal, and whether he can ever possess the pure, rigorous, indivisible concept, as such, of that attribution.”29 Posthumanism of this sort is not

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concerned with attributing “agency” to objects, in other words, but endeavors to deprivilege characteristics that are meant to define the human as human: reason, self-­consciousness, language, culture, freedom, and so on. Ranking people and beings in this way is arguably the only thing the idea of “the human” has ever been good at, at least according to Giorgio Agamben.30 In The Open, he associates talk about being human with “the anthropological machine,” a loose assemblage of practices and projects that “functions by excluding as not (yet) human an already human being from itself, that is, by animalizing the human, by isolating the nonhuman within the human.”31 Agamben shows that the contested boundaries between human and nonhuman are managed by means of processes of normalization, that is, actions and ideas that hold up specific visions of what counts as normal and then, in various ways, enforce adherence to this vision so that people are made to worry or are made to suffer for not measuring up.32 And many accounts of what makes “us” human begin with arguments about the close relationship between humanity, on the one hand, and language and culture, on the other. This is certainly common in my discipline of anthropology, and accounts for Klotz’s critique: ethnography after ethnography, textbook after textbook proclaims that language is not just one characteristic of what it is to be human, but the very thing without which human beings would be no different from animals. Following Agamben and Derrida, Seshadri-­Crooks points out how, over and over again, there are stories of mute children supposedly raised by wolves or hyenas (and there are more than you might think) becoming objects of fascination for well-­ meaning wan chums who try to teach them to speak. She points out that the dehumanization and torment of disabled persons is not only about isolated acts of ableist prejudice, in other words, but also is tied to projects of framing and enacting what counts as human and humanism. Outhumaning rhetoric becomes suspicious if its aim is to try and rescue the hidden “languageness” of the mute while remaining attached to the notion that symbolic language is the best measure of real humanity. Perhaps wrongly, I detect in Collins a familiar wan chum, driven to write for reasons similar to my own. Murray suggests necessary caution, that there is a danger in becoming enamored with the appeal of saving the children we care for and love, such that “humanity” becomes refashioned as a tool for dividing up and ranking abilities and bodies in new ways.33 Partly for this reason, to unsettle assumptions about humanity and avoid “outhumaning” rhetoric, there are also nonhuman animals mentioned throughout this book—­dogs and cats, but also chimpanzees, monkeys, and gorillas. They are there in part to remind the reader of the problems with our assumptions about the human and with rhetoric premised on these assumptions.34

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These examples also make clear that seemingly shared signs can develop among various pets and animal companions, as well as among other nonhuman primates in the wild. Accepting this means acknowledging that the specific ways that Jeanne and I relate to Charlie are not somehow special simply because we are all human. Throughout this book, I consider situations where what appear to be mute people and animals can trouble precious dividing lines between the human and the nonhuman. I consider these various examples as opportunities to rethink communication and challenge the ideologies that become attached to communication, ideologies that tend to disfavor people like Charlie. This admittedly troubles me, but I want to see what we can learn by exploring these comparisons, these trials in innovative communication with the differently mute. I want to resist the pull to stand up and yell, “But my son’s human! So he’s obviously better! He communicates in a special way!” I think those are also wan chum sentiments, a perhaps understandable effort to save my son from people who might dismiss him or worse, when it may very well be my own thinking that has to change. I will continue to refer to myself as a wan chum throughout this book, to remind the reader of my partial perspective as a weak friend to my son. On occasion, I will also explain very personal things about myself. That is meant to help balance the fact that I am revealing a lot about a vulnerable person, my son, but also to remind the reader I am always an embodied and specific person, one with aches and pains, accidents and embarrassments, feelings and mistakes. My foibles are (usually) directly related to an argumentative point I want to make, but they also spill into the text. I do not talk nearly as much about my partner in all of this, my wife Jeanne. She will pop up here and there, but she is a much more private person than I am, and I endeavor to respect that. This choice can sometimes give the impression that I am doing this all alone. I am not, although that is how it can sometimes feel. And that feeling of solipsistic isolation and desperation (which Jeanne also experiences on occasion, she tells me) is a very real force in our lives together. While emphasizing in this way my imperfect standpoint, and mine alone, undercuts my own authority as narrator of my own and Charlie’s stories, it is my hope that these stories still challenge assumptions about humanity and communication. This includes especially the assumption that being human, and having a worthwhile life as one, necessarily means being verbal and lingual. In doing so I hope to combat ableism and disableism by making Charlie’s life and our lives together seem livable and worth living, despite my entitled wan chum complaints.

[ I n t ro d u ct i o n ]

We suspect Charlie wants to go outside because he moves with determination toward the front door of our apartment. Then, turning his head to ensure he holds either my gaze or his mother’s, he stretches his right arm toward the pile of shoes by the door, subtly wiggling his fingers as if softly playing a few notes on an invisible piano. We have seen this gesture from our teenage son thousands of times, though no one taught it to him that we can recall. We know it means he wants to leave. We do not and cannot know where he wants to go or why. Where I decide to take him is on a walk to the park down the street from where we live. Getting there, which is not guaranteed, will take dozens or perhaps hundreds more wordless signs to communicate our intentions to one another. Some will be as explicit as the extended arm and finger wiggle, some less so. A sideways glance, guttural moan, or quickened pace could all be significant. Or they might appear to mean nothing at all. Charlie lives entirely in a world of body language, of touch, gaze, and gesture like the subtle arm raise and finger wiggle. In sociologist David Goode’s terms, he could be called alingual, because he is not, has never been, and may never be fluent in something like English or American Sign Language (ASL).1 According to the many doctors, teachers, and carers he’s had over the years, our son is a “low-­functioning” adolescent on the autism spectrum. In many ways, however, our lives together are defined less by this specific diagnosis and more by the fact that we have to get on with something other than words.2 The labels applied to people like my son tend to focus on what they can’t do (see the preface). If instead we attend to their unique communicative strategies, we find that doing so challenges simplistic accounts of what people are like, how we connect with one another and live meaningful lives. In Charlie’s case a repertoire of communicative signs helps him manage interactions with other people in place of formal language. To do this he uses what are known as home signs. Home signs are ad hoc messages 1

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that are “developed to meet an individual’s or a small group’s needs for ­communicating.”3 Before deaf children learn an official sign language like ASL (and become culturally Deaf ), they tend to spontaneously develop their own, unique signs with family members at home. Charlie is not physically deaf (though we were encouraged to have him tested at a young age), but he uses home signs all the time. All of us do, in fact. You, reader, use them too. The joy and suffering of any and all relationships depend, in part, on the drama of teasing out hidden messages that go unsaid. Being a social animal means being invested in what is happening in other people’s minds. But these thoughts are ultimately inaccessible to us, so we come up with techniques and strategies. These usually take different forms depending on whether we think we know someone well or are meeting them for the first time. That makes every one of us a semiotic detective of sorts. We follow the signs where they lead in order to understand others better and be ourselves understood. When we begin to settle into familiar social groups, at home, at work, or wherever, we also tend to settle on some of these nonverbal techniques and strategies with other people, including how to show affection, offer greetings, occupy space together, share knowing nods and meaningful glances, convey disappointment or distress . . . These are home signs, messages that anyone outside that circle might not understand or pick up, though they could learn to in time. And such signs are more noticeable when, for one reason or another, words are unavailable. That is what makes Charlie a worthwhile guide through the world of home signs—­not because he alone uses them but because we all do. He is just the expert. My use of the idea of home signs has three dimensions to it in this book, each of which helps account for the kinds of arguments I make, the types of evidence I use, as well as the way I write in the book that follows.

Home Signs Are Not Only about Disability First, as already mentioned, in the academic literature home signs are typically related to impairment. You are not likely to encounter the expression outside of Deafness studies. My use of the term is meant to broaden usage to include more kinds of people and situations, as well as to challenge ableist conceptions of what human beings are like or what a good life consists of. Therefore, this book is about home signs, but not about deaf people per se. Existing studies of home signs are primarily about people who are thought to be on the way to learning an officially acknowledged sign language. In fact, one of the best known studies concerns how what were originally home signs among deaf people in Nicaragua were actively transformed into

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a full-­fledged sign language.4 This is a truly remarkable thing to document, but it could be taken to suggest a linear model of language development, as if everyone who is diagnosed as deaf is capable of eventually developing the same kind of fluency in sign language, allowing them to share “a language” with anyone else who is fluent, at least in theory. Perhaps the best known use of home signs in history is the widely and repeatedly adapted autobiography of deaf, blind, and white American, as well as noted disability activist, Helen Keller. In most accounts with which I am familiar, Keller is described as wild and uncooperative as a child, difficult and distressed due to her diagnosed disabilities. It is through the heroic efforts of her teacher Anne Sullivan, in popular retellings “a miracle worker,” that Keller learns to use her other senses to understand language, to communicate and act in more acceptable ways. In fact, to the extent that home signs play a role, they are usually regarded as a symptom of Keller’s condition, the feeble efforts she makes to communicate in the beginning and nothing more. Here is how playwright William Gibson describes her home signs in his celebrated play about Keller’s miraculous transformation: helen, six and a half years old, quite unkempt . . . her gestures are abrupt, insistent, lacking in human restraint, and her face never smiles.5

In act 1 of the play, Helen is playing with Martha and Percy, who are children of the family servant and are Black. Early on, Percy bites Helen’s fingers as she attempts to feel inside their mouths while they speak. Though they acknowledge this is how she communicates, as Percy says, “She tryin’ talk. She gonna get mad. Looka her tryin’ talk.” Compared to these earlier rejections, Sullivan is presented (both in her speech and general bearing, both of which are noticeably elite and white) as someone with the patience and discipline to bring out Helen’s hidden linguistic competence. Together, the two are believed to have overcome the limitations of mere home signing (abrupt, insistent) and opened the child up to the powers of written language.6 This is admittedly a great story and one that importantly highlights the centrality of care relationships in the lives of people diagnosed with communicative and other disabilities. I’ll have more to say about that below, since the carers Charlie has had over the years offer an important means of exploring home signs. However, the way the Helen Keller tale is often told and interpreted implies that, without language, the child’s life would have been not only worse but practically unlivable, lacking in human restraint, unsmiling. In semiotic terms, the over-­privileging of language above all other forms of communication is known as glottocentrism. Deaf and

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Deaf Blind activists add to this list of semiotic biases the terms audism (a bias against speaking through nonauditory means, like gesture) and distantism (a bias against communicating through physical proximity and touch).7 Together, these terms convey how social oppression is linked to the general devaluing of communication beyond and beside language. In sociolinguist Crispin Thurlow’s words, it is necessary to provincialize language, not to deny its importance but “to recognize its limits, to acknowledge its constructedness, and to open ourselves up to a world of communicating and knowing beyond—­or beside/s—­words. And this will likely require a more committed decentering of language than even multimodal analysts have been able to manage.”8 I endeavor in this book to decenter language, or popular misconceptions of it at least, through home signs. Home signing is significant in part for how it troubles widespread assumptions, or ideologies, regarding language and humanity. This includes two related assumptions: that people always speak, and that only people speak. There is a history of scientists working, on the one hand, with people diagnosed with disabilities and, on the other, with captive animals, to explore and redefine the limits between linguistic humanity and nonlinguistic animals. Yet nonverbal communication seems to exist beyond and beside these debates. Some of the home signs I will refer to throughout this book, for instance, could be glossed as “attention-­getting” gestures, versions of which have been observed among nonlinguistic, nonhuman apes as well.9 But that does not make those apes somehow equivalent to nonverbal people, except insofar as they have a formally similar complement of signing practices at their disposal to convey information nonsymbolically. My goal in this book is to explore what kind of communication is empirically possible, regardless of whether one is recognizably fluent with symbols or not. But because research and writing on communication so often involves comparisons and experiments with nonhumans, I mention them in every chapter. If this can raise problems, given historical and ongoing mistreatment of people labeled “inhuman,” there are also problems with reaffirming human/animal binaries and the exceptional image of human beings connected to them. Like Sunaura Taylor, I attempt to “reframe the comparison of animal and disability issues, acknowledging the violence caused by such histories of dehumanization, while also taking seriously the need to ­challenge the role the animal has been forced to play within ­dehumanizing systems and rhetorics.”10 As she makes clear, these systems “are built upon, among other things, ableist paradigms of language and cognitive capacity.”11 As I use the term, home signs are more idiosyncratic (shared by a smaller group) and more haphazard (co-­constructed in real time, on the fly) than

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formal language is often thought to be. By “formal language” I mean the term as it is treated in modern linguistics, as a way to refer to and make judgments about the world through words, or denotation. For centuries—­at least since Descartes wrote, “I think, therefore I am”—­it has been widely believed that people gifted with fluent speech also, and for this reason, have the capacity for self-­consciousness and reasoning. For its proponents, the reflexivity of language, the basic understanding that a sign is a sign, is what makes it a special, ideal, abstract, closed-­off, and all-­too-­human system. That is not how everyone understands language, and I follow the lead of those others. Linguistic anthropologists and sociolinguists, for instance, tend to bring language back down to earth, as centrally implicated in and mediated by social life and cultural values.12 Charlie is not deaf or deaf and blind, but as a home-­signing teenager, he is routinely subjected to glottocentrism, audism, and distantism, sometimes by his own parents.13 This is not really a book about autism, therefore, even though it focuses largely on a child with this diagnosis. For one thing, there are people on the autism spectrum who do not rely exclusively on home signs to communicate, and there are people without this diagnosis who do. The latter group includes not only some deaf and deaf and blind people, but also some of those diagnosed with rubella syndrome aphasia, dementia, traumatic brain injury, and a range of other conditions.14 Whatever the labels, Charlie communicates all the time, as do many people with these other diagnoses. More to the point, insofar as they communicate beyond and beside language, they do so in a formally similar way. Yet this is also not a book about linguistic or cognitive disability, not exactly. Rather, its subject matter is relevant to everyone, regardless of whether or not they live entirely without words—­as Charlie does now, and as it seems he will for the rest of his life. While they come in a wide variety of forms, home signs are of great importance to the (temporarily) able-­ bodied and neurotypical, as well as to people like our son.15 Put differently, Charlie is not alone. The ability to speak a language is not something every human being can do, and it is not something anyone does for their entire lives. When we start out we are all incapable of speech; that is the origin of the term in-­fant, which comes from the Latin for “not speaking.” Those psychologists, linguists, and anthropologists who have carefully studied parent-­infant interactions have observed, prior to language acquisition, nonsignificant early movement and babbling gradually turning into more significant, but not yet linguistic, elementary gestures and vocalizations. Moreover, carers (often, but not always, mothers in these situations) tend to believe that these acts are intentional communicative acts and treat them in this way.

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Scholars normally find these “pre-­”symbolic behaviors less interesting than the fully symbolic signs that often develop afterward, but that does not change the fact that what appear to be communicative acts can be found among infants before language can.16 As George Herbert Mead put it, “language simply lifts out of the social process a situation which is logically or implicitly there already.”17 Mead was also among the first to make clear that, when comparing nonsymbolic gestures to symbolic language, it can be hard to know whether or not the gesture is consciously intended; moreover, it may be impossible to tell, in the absence of a shared symbolic code of some sort, whether all participants interpret the same gesture in the same way.18 But even when symbolic language does develop, a significant number of us, if we are lucky enough to live that long, are likely to end up incapable of speech at the end of our lives as well, to “peel away from language,” as poet and author Maggie Nelson puts it.19 In a way we are prepared for that, though, because throughout our lives we are likely to spend time with ­people, significant others, with whom we communicate wordlessly (see chapter 4). And we do that in part with gestures and home signs. We may still use symbolic gestures—­for instance, shake our heads to mean no (or yes, depending on what part of the world we are from)—­but we will also find new ways to communicate our needs and thoughts to the people whom we are closest to, with whom we share more than just culture. Some people understandably struggle later in life if they are suddenly left with limited or no access to words, or if they do not have people around them whom they know well and who know them. I expect it will bother me a great deal, if and when that happens to me, and I can no longer speak and write. In that respect, at least, Charlie is ahead of the curve. If that sounds provocative it is because most of us learn to perceive a child’s inability to talk as a regression, not as advancement—­a step backward into quasi-­infancy and not forward into being an elder. As surely as children grow physically, they are meant to grow linguistically and socially, too. Most scholarship implicitly supports this perception of language acquisition as a linear trajectory, from alingual infancy to fluent adulthood, as if some hidden force were directing us inevitably behind the scenes. The primary trend in studies of linguistic development over the last half-­century, in fact, has been toward an emphasis on cognition and the brain as if they were such a force.20 One benefit of this approach has been a recognition that new language learners are not passively imitating or learning skills from their more fluent caregivers. Infants are, as leading architect of the cognitive approach Noam Chomsky made clear, actively involved as innovative problem-­solvers in reinventing language from scratch, which for them is

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brand new.21 At the same time, by associating this process purely with internal, mental transformations, the cognitive turn tended to place less importance on the social context of language development, or indeed on lived experiences of language and the mind in general. More innatist and internalist cognitive approaches tend to view people diagnosed as linguistically impaired as an exception that proves the rule: people with normal brains gain normal language regardless of experience.22 By contrast, other linguists and linguistic anthropologists have been calling attention to the centrality of development for some time.23 The scholars who inspired this book take lived experience seriously and devote considerable empirical attention to the actual interactions, the everyday worlds that people diagnosed with cognitive, developmental, and/or linguistic disabilities inhabit. An early alternative to the Chomskian revolution came in the research of psycholinguist Elizabeth Bates. Bates is important for this book, in particular, for recognizing that nonverbal communication has to be understood on its own terms.24 This led Bates and her collaborators to combine evidence from literatures that had tended to remain separate, including observations, experiments, and interventions in the lives of infants undergoing development alongside atypical or disabled individuals. They did research at the fuzzy boundaries dividing infant from adult, able-­ bodied from disabled, and human from nonhuman (including eventually not only nonhuman creatures, but also human-­made machines and near-­ human ancestors). Contemporary anthropologists of disability are more invested in challenging ableism within and outside of academia.25 Ochs and Solomon conducted a decade of in-­depth ethnographic work with children (somewhat) like Charlie, which they used to make arguments regarding human sociality in general.26 That is, in their analyses they are leaving questions of normal/ abnormal to one side. Bates, Ochs and Solomon, and others like them, could instead be seen as “queering” or “cripping” ideas of ordinary competence by showing that it is not and has never been what it seems.27 While Bates’s early research did investigate “abnormal” language development, this was done with the partial goal of showing that some skills normally assumed to come only through symbol use—­such as an ability to grasp intentions and imitation—­could exist with limited or no symbolic capacity.28 Years later, refusing an absolute and ableist distinction between “abnormal” and “normal” minds, Ochs and Solomon wrote: “human sociality consists of a range of possibilities for social coordination with others, and autistic sociality is one of these possible coordinations.”29 Communicative abilities are defined even more broadly as a result of this work, not as something one either has or does not have.

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In this sense, this book is also not really about language. To be sure, ideas about language will appear throughout, but they are meant to help tease out the gray area that home signs, by contrast, occupy. Some of these problematic ideas include: The notion that language is a closed, symbolic system (when in practice it often comes with other co-­signs, such as gesture or facial movement), whereas home signs appear too open, they spill into other signs and can be learned seemingly with intuition; That language is therefore abstract and ideal, rather than unavoidably material and practical in its use and existence, whereas home signs are very bodily and contexual; That language is primarily a way of passing ideas from one isolated mind to another, as opposed to being fundamentally relational and inter­ personal, while the centrality of the relational/interpersonal is evident in the term itself—­“home signs”; That language is the best or only way to reflect on the world, on oneself and others, specifically because signs offer a way to distance oneself from both (as in “I think, therefore I am”), whereas home signs may offer ways to do this as well; Finally, that these various qualities directly relate to being recognized as an autonomous and ethical agent, in a world of similarly abstract, isolated, reflexive minds, and a supposed way of being a legitimate semiotic agent that appears just out of reach for home signers. Home signs are easier to recognize in tension with these widespread yet flawed ideas about language. But my main goal in exploring this tension is to help in understanding home signs on their own terms, not as either the same as or less than language. A focus on home signs therefore also aligns with some of the aims of critical disability studies, by troubling the absolute distinction between disabled and able-­bodied, or mute and lingual, which are particular species of the more general divide between “abnormal” and “­normal.” These problematic distinctions also provide support, more broadly, for exclusionary and exceptionalist accounts of the human, considered to be the symbolic species, the speaking ape, as absolutely distinct from nonhuman animals (see preface and chapters 3 and 4). The kinds of sign work that care situations reveal raise the stakes and intensify the gamble of successful interpretation, which is not only about knowing what someone means but also about recognizing the possibility of exchanging meaningful messages with those who are regarded as if they were “languageless.”30

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Home Signs Are Idiosyncratic For good reasons it is normally assumed that a deaf child will end up as a member of a Deaf linguistic community, at least where formal training in sign languages is available. With this assumption in mind, home signs might only appear as an obstacle on the way to that next phase of their lives. But at least some of those children never gain fluency in a formal sign language; home signs is all they have. If this seems limiting, it might be because the field of one’s potential interlocutors effectively shrinks. Helen Keller, had she been left with only home signs, would have found ways to communicate with her family and familiars, but likely would not have spoken to broader audiences on behalf of disability justice, as she later did. Instead of being able to reach all signing members of an ever expanding Deaf community, an exclusive home signer is left with only those people who learn their signs and, potentially, only those who directly enter their physical space. But that might be enough for them, and this is crucial to understand. That leads to the second key dimension of home signs: they are idiosyncratic, meaning that they are not widely shared beyond specific social contexts, including but not limited to actual “homes,” where people form close (but not always pleasant) relationships with one another. The term “home” is relevant here for its spatial connotations, because home signs rely not only on familiar people, but also on cohabiting the same context, that is, being mutually present to one another in the same place and time. I have to be physically close to Charlie, and he has to know that I am, for him to think I can be reached with signs and for me to convey that I understand or that I do not. This is a function of the specific semiotic infrastructure that home signs rely on to convey meaning. Unlike home signs, ASL and other sign languages are fully and thoroughly symbolic, meaning that they convey meaning by convention. Someone, centuries ago, decided that “unicorn” could mean a horse-­like fantasy being with a horn on its head. That is the meaning speakers of English still give to that word, though it has changed over time slightly, to include start-­up companies that attract investment, for instance. The less context-­dependent, more conventional or arbitrary connection between sounds/letters and ideas that makes up “unicorn” means the term can spread over great distances and last over time. Home signs, by contrast, rely on direct contact and contrast. Charlie and I have never had an ­interaction about either of these senses of “unicorn,” though if there was something unicorn-­like physically in the room with us, we could. This can make home signs seem abrupt and insistent, as Gibson characterized

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Keller’s home signs at the start of his play.31 Fully symbolic signs are theoretically shared within a broader community, that is, people use them in roughly the same way. Charlie’s home signs are meant for people immediately around him, and they may remain in use only as long as that group, that “home,” lasts. Home signs can produce inexactly shared but directly felt meaning for a small group, even as small as two people. For instance, the gestures that infants come up with often gain meaning in the context of caregiving ­relationships.32 Unlike the vaunted powers of symbolic language, these communicative acts work entirely through contact and contrast, no symbols required. Here is an example: This just happened. It is a Saturday evening at the beginning of August 2021. Charlie summoned me to his side for some personal attention by abruptly slapping the space next to him where he was seated on the couch. I am on the other side of the apartment and am a little tired, but I comply. Prior to the summons, he spent most of the day keeping his distance while Jeanne and I quietly celebrated her birthday and watched Netflix in our bedroom. It is basically a normal weekend day for us since we try not to make a big deal out of ritual celebrations like birthdays or holidays. He does not seem to know what they mean, anyhow, and it only makes us compare our lives now to what they were like when we were children or what we thought they would be like when he was born. That never helps.

The next few moments involve various home signs. They involve getting joint attention and giving instructions: Home sign 1, getting attention. Charlie communicates that he’d like one of us to attend to him by home signing a “slap.” This conveys meaning through physical contact (including both his hand with the couch and all of us attuned to the shared sonic medium of our apartment). But it mostly works through contrast. The reason the slap is interpretable is that it is very distinct as a sound, effectively piercing through the ambient noise of our apartment. This is hard to mistake for any other sound. The slap does the job especially well because Charlie makes no other sounds or vocalizations at the same time, allowing it to hover in the air all by itself for a moment, a sharp break in the apartment soundscape. Home sign 2, giving instructions. I am summoned by the slap. But, at first, I can’t be sure whether he wants me around at all—­sometimes the slap

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is meant as an annoyed warning (“quit talking so loud,” “turn down the TV in your room”) or is the prelude to a more specific request (“I am ­hungry”). Charlie can’t say any of these things, not exactly, I must infer them through his home signs. Instead, the next series of home signs all involve direct bodily contact, with him taking my hand in his. What follows is another class of home sign that combines contrast and contact. There are at least three, all of which stand in marked contrast to one another. He will either pull me toward him (“spend some time with me”), or send my hand away by first taking it and then casting it from him in a different direction. My castoff hand will only be sent in one of two directions, either toward the kitchen (“get me something to eat or drink”) or away from the living room (“go away, I just wanted you to cease what you were doing [when the slap was delivered]” or perhaps “I just wanted to see if you’d come”). When he does either of the latter two gestures, he does so with something of a flourish or follow-­through, so that in fact his hand hangs in the air for just a moment before curling back to his side. When Charlie does the “go away” sign, he holds a bit of a wave at the end. You might miss it if you don’t pay close enough attention. Each sign involves touch and movement, and yet is uniquely meaningful because we can distinguish it from the other two easily enough. If they were not sufficiently different, we would confuse them for one another. In this particular instance, he made clear that he wanted me to spend time with him. This was my educated guess, at least, because he took my hand in his and pulled me forward.

That is nonlinguistic semiotics, in a nutshell. It is also distinct from formal language, with its shared conventionality and symbolism (as when I characterize something metaphorically as “a nutshell”). In another sense, this is arguably where all language develops from in the first place, just with more and more elaborate and abstract combinations of contrast and ­contact. While a symbolically fostered collective (a society, a nation, a religion) certainly could turn any one of our gestural acts into a shared code over time, symbols are unnecessary for the encounter just described. If I want to describe the home signs for someone who wasn’t there—­you, for instance, reader—­then I need formal language to offer a secondary description. If you were here, and with enough time, Charlie could teach you himself.33 The idiosyncrasy of home signs makes them specific to particular people who are close enough to use direct contact and contrast to communicate and who are around one another enough to recognize patterns in these efforts over time, as we have with Charlie and he has with us. In this book, I therefore use both auto-­ethnographic descriptions of our lives together

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and ethnographic observations of professional care workers who form idiosyncratic relationships with home signers as part of the labor they provide. Though it is not “miracle work,” this labor is arguably unique and certainly undervalued. I will have more to say about both of these approaches, but first want to finish outlining what makes home signing distinct and worth examining.

Home Signs Are Innovative “Innovative” and “idiosyncratic” can be related adjectives. If something is new, it is by definition different from what came before and therefore unusual. To say that home signs are innovative as well as idiosyncratic is to draw attention to the fact that creativity is often involved, and may in fact be required, when people form relationships with each other beyond and beside language. It is not only that members of small groups are communicating with one another in ways that others would not understand, but also that to do so involves intensely playful or experimental modes of expression. Home signs are the result. Rather than compare home signing unfavorably to certain dominant conceptions of language, it is important to identify its positive c­ haracteristics. In general, terms like nonverbal, paralanguage, or alingual characterize Charlie’s way of communicating in semantically negative terms, as somehow lacking, as something less than real language.34 Home signing is a kind of nonverbal communication, but “nonverbal” can be a slippery term. For this reason, over the years different scholars have recommended “kinesics” as a replacement. This term was coined by anthropologist Ray Birdwhistell, following others such as George Trager and Edward Hall, to describe communicative behavior that is more than simply not-­language.35 For Birdwhistell, kinesics includes the study of gestures of all kinds, as well as bodily spatial positioning (or “proxemics”), all of which send subtle messages to others, whether we realize it or not. Any communication without words is going to involve the body as a medium of transmission and inscription, that is, as a vessel to convey information back and forth between those communicating. And any form of bodily communication is somewhere on a sliding scale from the completely improvised to the conventional, and from completely unconscious to fully intentional. Consider Gibson’s characterization of Helen Keller’s prelinguistic behavior: for him, and for the purposes of the play, she appears more animal-­like, “abrupt, insistent, lacking in human restraint.”36 It is exceedingly common in

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accounts of mute people to place them, even if anxiously and ambivalently, closer to nonhuman animals than to other human beings. This also tends to reduce their actions to instinctive behaviors, making it harder to regard them as intentional, let alone creative. But this is a problem for gestural action, in general, regardless of the purported languagelessness of a communicating subject.37 But there is a paradox associated with the creativity of language, since, as many philosophers and theorists have never tired of pointing out, while in theory we can use linguistic symbols to continually express new ideas, we do so trapped within existing rules of semantics, syntax, and grammar, and existing genres of writing and reason. Culture has been understood by anthropologists in broadly analogous ways, as a flexible resource, a symbolic reservoir that allows people to imagine almost anything so that they can live in nearly any kind of world. And yet, culture is also not something invented out of thin air but, like language, a set of traditions learned and relearned over generations, only ever slightly modified or, as Chomsky said of language, “reinvented.” In recent years, there has been growing interest in social emergence and creativity, associated with rereading philosophers (mostly wan chum, see preface) from the turn of the century, such as Charles Peirce, William James, Henri Bergson, and Gabriel Tarde.38 I mention their ideas at times throughout the text, but what they arguably share is an interest in restoring some sense of creativity in social life that does not take the form of the familiar Enlightenment ideal of an (again, ideally wan chum) individual who is free to govern themselves because they have earned reason through symbolically mediated self-­reflection. Not only can home signs be intentional, they are arguably an ideal case of true communicative innovation in a situation where a shared language or culture (understood as a web of shared symbols, at least) is otherwise l­acking. The result is not symbolic, but can still have what Andrew Lock identifies as semantic force, based on his work with infant-­mother interactions: Home sign 3, choosing vocalizations. So I am now sitting with Charlie on the couch in the living room on Jeanne’s birthday. There are a lot of things to work out, in terms of how we will interact. One is what sounds he wants me to make. Does he want me to make any? Does he want me to be completely silent? to make a high-­pitched noise, a low tone, a soft whistle? to praise him or sing a song . . . ? I know he doesn’t want me to speak much, if at all, which is fair since either he recognizes what I am saying but can’t reply in a way I’d understand, or he recognizes none of it and only hears gibberish. It is hard to know for sure.

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Without words, Charlie has come up with another innovative way to let me know which of these sounds he would like to hear right now, while we spend time together. He reaches up and flicks two or three fingers across my lips, about as hard as if he were trying to remove a crumb of food stuck in my mustache. That gesture means something like “do something different with your mouth.” This clues me in that I should randomly choose another noise, or silence. Since he hasn’t figured out yet how to specify exactly which he’d like, Charlie keeps flicking, as if he were changing a radio dial, and I keep alternating sounds each time, until he ends up with the one he wanted all along or can tolerate for now. After too much of this, the skin of my lips begins to feel irritated and we both get annoyed. But he only ever touches my lips in this precise way in this situation—­to tell me what noises to make. It is a home sign that Charlie came up with as a teenager that communicates a message through contact (flicking lips = “do something different”). When he stops touching my lips, it communicates a message through contrast (stop flicking = “that is okay, do that”).39

This form of creativity is not as easy to document as, for instance, great works of art. At least ideally, for something to be considered “art,” it normally has to demonstrate some kind of transcendence from mere material and bodily constraints, to leave behind pure practical utility or necessity.40 If home signing is a form of nonverbal communication that falls below the threshold of recognizable language and high culture, however, it also is one that cannot be written off as biologically driven and/or universal, like the human gag reflex that is triggered by a noxious smell or rolling one’s eyes in annoyance.41 In practice, home signing often ends up somewhere in this gray area between completely conventional language and culture, and completely natural signs. This is not only about glottocentrism, audism, or distantism; as the examples given here illustrate, it is also an empirical problem. It can be challenging to document when new home signs have been invented and by whom. In our case, we usually notice only in hindsight that we or Charlie have developed new forms of expression. When home signs develop between two or more people, they cannot fall back on a shared code that all have learned or a shared instinct that all have inherited. It is not as if any human being, any English speaker, or any American could see Charlie wiggle his fingers by a door or feel him flick their lips and immediately discern what he means. They would need time to figure that out—­and even then, there is no guarantee of “fluency” in Charlie signs, no way to know for sure that they eventually got it right (see chapter 4). Given that home signs are

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distinct in principle from natural messages, formal language, or shared culture, they provide a clear example of the wider, weirder, unexplored world of ­nonverbal communication. This freedom from shared codes, learned or evolved, is arguably what makes home signing kinesics at its most improvisational and idiosyncratic.42 In colloquial English, “body language” tends to mean something unconscious and unintentional. But kinesic signs are often socially learned and intentionally expressed, not automatic or autonomic. If home signing is not quite language, it still reveals the body to be a more flexible and surprising communicative medium than we might otherwise assume. The kinesic improvisation of home signing is worth understanding better, in part, because ours is a divided and unequal, yet hyperconnected world. In any given interaction, interlocutors may have different levels of competence and must therefore rely on a shared “visual action space” to effectively translate; they may be part of multilingual settings that require an expanded communicative repertoire “beyond language”; or they may belong to completely different biological species and need to find ways to communicate using “trans-­species pidgins” to live together, to establish successful scientific ­trials, or to win competitions.43 All of these very different situations might involve home signing, meaning new and creative efforts to understand and be understood beyond and beside language. In these moments, the likelihood that improvisational signing will be required is greatly increased, whether or not the interlocutors in question can hear, whether or not they can speak. Understood in this way, home signs would be a product of the tendency for all signs to grow and spread, tying us to one another as part of an evolving global community.44 Home signs reveal social creativity at its most dynamic and improvisational. We are forced to make everything up as we go along, from the simplest exchanges to the deepest emotions. It is exciting, and it is intensely frustrating. If we take as our starting point the substance of actual inter­actions, rather than semiotic ideologies about what a human is or ought to be, who should or should not have a voice, it becomes clear that improvisational nonverbal communication and interaction is essential, and not only for human beings.45 This book traces out some implications of this insight, with one intrepid, home-­signing teenager and the people in his life as our guide.

Method and Structure of the Argument Because this book draws inspiration from people who inhabit relatively wordless worlds, like Charlie, it is not a standard social science text in many

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ways. In the chapters that follow, I aim to unsettle the ableism that negatively influences widespread assumptions about humanity in anthropology and beyond. But this is complicated by the fact that I am not diagnosed with a disability (apart from occasional depression), and I live with disability primarily as a caregiver and would-­be but weak ally (a wan chum). One clear message from disability activism over the last several decades has been the importance of giving voice to disabled people so that they are not only written and talked about but read and heard from. While this book is not exclusively about disability, for reasons already explained, I am partly motivated because assumptions about the primacy of speech (activism as “speaking truth to power,” for instance) effectively exclude my disabled son from disability justice activism as normally understood in late liberal settings. Therefore, in this book I hope to draw attention to unequal access to voice and self-­representation that some people experience as disability and as debilitating social oppression.46 Representing Charlie’s home signs, re-­representing them in written form as it were, is already fraught from the start. The reader will have already noticed that this is a book full of words about the importance of looking beyond them! These are words that Charlie did not and cannot say, write, or recognize. And this paradox is actually another central tension at the heart of this book, the inevitably unfaithful representing, in the medium of words, of wordless home signs. I explore this tension through auto-­ethnographic vignettes and through fieldwork with professional carers for different kinds of more or less “alingual” people, including carers for Charlie. The first involves auto-­ethnographic observations of living with my son, as in the vignette I used to open this introduction. Auto-­ethnography is occasionally misunderstood as autobiography or memoir, when its goal is to complicate the idea of a single and authoritative self by revealing the constraints and affordances of becoming a person in a complex and unequal world.47 Feminist auto-­ethnography, in particular, attends to the slippage between the socially structured position from which any person writes or speaks—­as a gendered subject or political agent, for example—­and the instability and plurality of the actual person behind that enunciating “I.”48 To begin with, in this text I socially position myself, the “I” of my auto-­ ethnographic account, as a privileged white, able-­bodied, and lingual man. Another way I do so is by experimenting with voice and stance, shifting from writing as an author to writing as a father and carer. This experimental writing ultimately hinges on positioning my “self ” reflexively, on the one hand, and complicating and destabilizing that seemingly fixed standpoint, on the other (see preface). The written auto-­ethnography therefore comes in two forms. It can illustrate the situatedness of my account in content—­as when I explain nonverbal communication with a vignette about Charlie

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asking to go outside without words. It can also do so in form, as a poetic break from the main text, with the alternative auto-­ethnographic vignettes that highlight the message itself. My auto-­ethnography derives from my own life with Charlie. But nonverbal communication is not just common to all, and a way of life for some, it can also be a kind of labor for a distinct class of workers. Anyone who finds ways to relate to people who live without words may also, in doing so, enforce deeply held cultural values and systems of power.49 The workers I interview are primarily individuals from western New York state, but we have been talking to and getting to know care workers since Charlie was diagnosed in London in 2008. Combined with my auto-­ethnography, this ethnographic fieldwork highlights the importance of nonverbal communication as a form of life and labor. It is spring 2020. I feel odd and cloudy, under the influence of two Tylenol that I took after I woke up feeling a headache coming on. I sip coffee I have been nursing for two hours. I sit alone in a common area of our apartment building, where I work most days since the stay-­at-­home advisory was issued two months ago to limit the spread of COVID-­19. Right now, as I rewrite this portion, Charlie is a floor above me with a caregiver who comes every Monday afternoon. I couldn’t hear anything even if I tried. When I go back to our apartment, in two and a half hours, one of the first things I will be told is whether or not he “sat on the toilet,” whether or not he had any bad accidents, and this will lead into a larger discussion, albeit for no more than a few minutes, about how “good” he was. My thoughts and my hour-­to-­hour schedule will be about his incontinence soon. Right now, though, I am free from that concern, alone with my not-­quite-­ headache and cold coffee.50

While we encountered broadly similar pedagogical and medical sensibilities in both London and Binghamton, the main difference between these sites is about the sheer range of services and specializations, not to mention the multicultural superdiversity, that come with a major metropolitan center, a global city like London. A three-­hour drive from New York City, Binghamton is firmly ensconced in the farmland and suburbs that make up New York state’s Southern Tier region. According to the 2015 census, this region is dominantly rural, with the greatest number of farms of any region in the state. In those few, tiny cities that dot the landscape, such as Binghamton, Owego, and Elmira, the New York Federal Reserve observed a “skills gap” caused by overall population decline in the region

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and an aging industrial workforce ill-­prepared to fill available jobs in the post-­Fordist sectors of “health care, engineering, education, transportation and information technology.”51 Among other things, that means that places like Binghamton struggle to fill positions in special needs childcare and education; moreover, what positions they do fill involve further attracting exurban workers from the surrounding, more rural areas of the region, who sometimes have to relocate entirely or face long commutes to work where the jobs and clients are.52 The economic and geographical incongruity between London and ­ eople Binghamton overlaps to a certain extent with the backgrounds of the p who cared for our son. When Charlie was first diagnosed with autism in 2008, this also inaugurated the beginning of a relationship with professional care that will likely last his entire life. What that meant, for us, was that daycare and in-­home care became something distinctly different from either “education” or “babysitting.” What care workers tend to have in common, in both locations, are precarious working conditions born of ongoing postwelfare reforms. On the one hand, growing numbers of people around the world are debilitated and disabled by global conditions of inequality, hierarchy, and systemic disadvantage.53 But it is also true that those who provide care for people who need it, paid and unpaid, also face forms of exploitation in the process of providing this care.54 There are many people, including but not limited to family members, responsible for caring for and living with people like Charlie in our community, in our country, in the world. What Elana Buch calls “generative labor” includes more than professionals and clients, and can encompass a broader social network of relations and various expressions of relatedness.55 In fact, getting to know Charlie’s carers over the years has made us see and treat him differently. The basic argument of this book is also the guiding philosophy of many care workers I’ve come to know: that each person they meet will have their own specific way of communicating just as they have specific needs. It is not only artists who take on the production of meaning as a creative endeavor; it is not only anthropologists in far-­flung places who believe that differences in meaning can be bridged through exposure to other ways of life; it is not only love that leads someone to devote study to another person’s unique foibles.56 Jessie is a young, white woman who worked with Charlie for several years.57 She is responsible in part for how we have altered his diet and for how we play with him. In my interview with Jessie, to my surprise, she challenged my description of him as “nonverbal,” which led me on a path that eventually brought me to the work of Ray Birdwhistell and Adam Kendon, and to kinesics. In the sixteen years that she has worked

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with children and adults with various linguistic and cognitive disabilities, Jessie has learned to distinguish between those who “can’t speak at all” as a result of “autism, physical handicap, traumatic brain injury” and those who “can make noises and/or slight sounds to screaming, laughing, almost like an infant would. The less limited would be ones that can talk but they just have such bad speech impediments that you can’t understand them.” Charlie is not the “most handicapped,” in Jessie’s view, despite seeming not to speak a single word.58 Charlie does make sounds with his mouth, after all: he conveys meanings with moans, whimpers, giggles, howls, and squeals, along with hand signals, material exchanges, and the occasional fist, pinch, kick, or head butt. For Caroline, a middle-­aged white woman who currently works as a speech and language pathologist with Charlie, these signs are all a part of his “voice” even if they do not qualify as language proper. Jessie also made clear how difficult a career is caring for people without words. This has been echoed by other people I interviewed for this book, who also say that working with special needs children and adults as an aide (rather than as a program director, nurse, teacher, or therapist), means making very little money, having few benefits, and getting little credit, all while negotiating extremely difficult conditions to develop a shared understanding with clients. To supplement and extend my observations, I include interviews and observations with professional care staff in rural New York, some of whom have worked with us and our son, but most of whom have not. This adds a more in-­depth understanding to the context within which the auto-­ethnographic interludes occur. This context includes a neoliberal form of governmentality that spans the globe and creates perilous and precarious situations for severely impaired people as well as the workers who care for them professionally. Even in places with ostensibly good options for people with severe impairments, such as New York state or London, neoliberal reregulation serves to routinize contradiction and confusion as ordinary dimensions of everyday life.59 Buch and other scholars make clear that care in homes, medical facilities, and beyond tends to involve precarious conditions, marginalized staff, and an increasingly global hierarchy of reproductive labor.60 Less often remarked upon is the fact that such generative labor involves negotiating and moving between distinct microworlds without the benefit of words. Yet, carers of people with language problems must learn and in some cases expand the home-­signing communicative repertoire of their clients and ­students. They are anthropological practitioners routinely crossing thresholds of radical difference, often for little pay and minimal recognition. Interviews with carers are used to supplement my account of living without

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words with Charlie. At the same time, I acknowledge the broader political and economic sets of inequalities that spiral out from the necessity of taking care of people in the midst of neoliberalism. These interviews and examples aim to anchor the argument in the lives of specific people, in events, and in relationships. The people are either primarily home signers or the family members, carers, strangers, and medical practitioners who interact in this way. The events are related to caregiving and especially to the struggles we all undergo as part of this practical and affective labor. The relationships concern how home signers relate to the world and to us, and how we all have to relate to each other and adjust to each other’s differences. I put forward home signs as a highly innovative and improvisational kind of communication. In this sense they are something different from traditions culturally learned or instincts naturally ingrained. My goal in doing so is not to introduce a new typological distinction, that is, to insist that certain actions and interactions should be classified as always and everywhere “home signs” while others should not. The fact is that in many situations it may be impossible to tell for sure. Instead, my guiding assumption is that some sign activity defies classification as one thing or another in many instances, as nature or culture, for instance. Put differently, home signs usually mean epistemological trouble; they do not offer typological ­neatness. Wherever there is dynamic, controversial, and troublesome semiotic action, signing that appears either to go beyond the limits of formal language or to cross the ideological barriers dividing groups of people or kinds of beings, we may detect the traces of home sign activity. Home signing can be so unsettling and beguiling, that one can easily confuse it for something more familiarly “natural” (what I will call undermining these signs), or “cultural” (what I will call overmining).61 The first two chapters of this book are partly framed as interventions in popular and scholarly discussions around physical interactions—­violence (chapter 1) and tickling (chapter 2), respectively—­which tend to be reduced to purely physical encounters. As a result, their immediate impact on one’s flesh can appear to leave no room for the performative and interpretive qualities typically associated with intentional sign activity. It is as if you are either hurting someone or being hurt, or you are not; you are either tickling or being tickled, or you are not, and nothing more. Here home signs are potentially undermined if novel forms of communication in and through bodies go unrecognized as such. In these opening chapters, I challenge some of these undermining assumptions about physical contact, which I take to be a resource for experimental and sometimes risky communication. The next two chapters, by contrast, focus on situations where re­lation­ ships—­with familiar objects (chapter 3) and with caregivers (­chap­ter 4)—­can

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create the opposite but equally narrow impression. In the first instance there is a danger that signs are not recognized as mediating experiences and interactions at all. In these chapters, the mediating role of technical procedures, fluent interlocutors, and anticipating carers can lead to what I call overmining home signs, meaning they are not recognized because the tools and words of fluent linguistic actors appear to take over interactions, to rule out altogether the possibility of emergent or experimental signs. In these situations, it is as if no innovation is possible, no genuine novelty in communication, because all messages are predicted in advance as part of carefully curated experiments or close personal relationships. This can result in situations where it appears unclear that there is an intentional “I” speaking, because their messages are being mediated through an experimentally elaborated communication device, on the one hand, or in situations of carefully orchestrated caregiving, on the other. Each chapter begins with the basic struggle, ours and Charlie’s, to ­communicate. In chapter 1 I ask how we know if someone is communicating at all, examining especially situations where violence is misinterpreted and home signs are potentially denied. Chapter 2, meanwhile, addresses bridging gaps between interlocutors through direct bodily communication, looking especially at what I term the “queer” form of play known as t­ ickling. Chapter 3 goes further, examining what happens when home signing employs devices, such as communication equipment, to mediate exchanges, and how this can lead to controversies associated with impaired human and nearly human language learning. In chapter 4, I challenge the taken-­for-­granted “home” of home signing, interrogating the semiotic choreography at work among people who seem to know one another intimately, where conditions of interpersonal sympathy may render home signing less effective or even suspicious. Finally, chapter 5 takes on all of the perils of home signing explored in the book, in order to examine toilet training—­a practice that appears both too immediate and too mediated, too natural and too learned, to be ordinarily worthy of semiotic analysis. Becoming “housebroken,” in this way, also means breaking away from home signs and the sociality they bring to hygienic practices. Hygiene, in other words, not only becomes connected to home signs but also represents their potential limit, where intentional communication gives way to trained habit. At least that is what is supposed to happen. Charlie has other plans. These chapters therefore represent two ways to miss innovative and improvisational sign activity when it happens or, more precisely, when it might be happening—­as Mead argued, it can be hard to know for sure, there is a gamble involved. In this book I lay out various home signing situations, to show their value not as a form of communication, per se, so much as a way

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of regarding communication differently. But the risks of undermining home signs as nothing but immediate interaction or overmining them as a byproduct of relational context are ever present. They come up again and again in our life with Charlie as parents, and from caregivers I’ve gotten to know. I will have occasion to challenge these misrepresentations of home signs using my own ethnography and auto-­ethnography, as well as the occasional example from the ethnographic literature, which, voluminous as it is, still has only occasional things to say about the simultaneously banal and yet somehow taboo dimensions of caregiving that concern me, from tickling to toileting. An alternative approach to signs comes up repeatedly in various experimental trials that have been conducted over the last century in the human sciences, especially in American psychology. Many of these experiments involve disabled humans and nonhuman animals that allow me to reframe the significance of home signs in Charlie’s life and beyond. A number of these experiments can be traced back to the radical empiricism of pragmatic philosopher and psychologist William James.62 This makes sense, in hindsight, because among other things James insisted on challenging idealist philosophical conceptions of mind, truth, and reason. As previously mentioned, idealist approaches to consciousness are partly responsible for glottocentrically elevating language to the supreme medium of communication and thought. Anthropologist Michael Jackson, who has explored James’s work more than most, points to how radical empiricism “seeks to grasp the ways in which ideas and words are wedded to the world in which we live, how they are grounded in the mundane events and experiences of everyday life.”63 As many have noted, James’s approach to thought and reality owes much to his lifelong dialogue with his friend and fellow Bostonian, Charles Peirce. For both James and Peirce, signs (“ideas and words”) are interpretations that we make in constant collaboration with one another. Our thoughts do not really remain trapped in our heads, in other words; through signs they become part of the world and the people around us in a very real way. Signs are, as it were, the mind turned inside out. To be clear, this is not a Jamesian text. If the reader is interested in what an anthropology following the tenets of radical empiricism might look like, that already exists in the form of Jackson’s Paths toward a Clearing.64 What interests me is how many of James’s students and interlocutors developed approaches to the mind that went against convention. Consciousness, for James and the generation of psychologists and practitioners he taught and influenced, was not some ideal abstraction linked with reason, logic, and spirit. It was a material process that could be empirically studied and even changed. It therefore makes sense that Walter Cannon would attempt to find a physical basis for fear when organisms feel threatened (chapter 1); that

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G. Stanley Hall would investigate the phenomenology of tickling and the development of children in general (chapter 2); or that Edward Thorndike would develop an approach to training organisms to learn anything, even language, without worrying about what is inside their heads (chapter 3). While some, most obviously Cannon, rejected James’s more holistic or monist conception of consciousness and the body, all of them went on to inspire later discussions in the century that followed. Some, mostly notably Thorndike, have directly influenced how people have attempted to teach people like Charlie to speak. Fittingly, my engagement with the Jamesian radical empiricist tradition is not merely intellectual, it is quite pragmatic. I essentially had to do research for this book in order to recognize that Thorndike (and James) were already present in my lived experience as a result of their profound influence on applied Anglophone psychology and pedagogy. In the latter half of the book, I veer away from direct heirs of James to people broadly engaged in pragmatic and modernist projects, whether directly influenced by radical empiricism or not. This includes drawing on modernist novelists who experimented with describing consciousness and intimacy in new ways, such as Virginia Woolf (chapter 4), and more efforts to reform or document consciousness, such as those by the inventor of interpersonal psychiatry, Harry Stack Sullivan (chapter 4), and social justice activist Jane Addams (chapter 5). If there is one core theme that can be found across the lives and projects of these individuals, it is their interest in and attention to experimentation as a feature of everyday life and as a clue to unwinding or expanding consciousness. What all of the chapters of my book have in common is a way of challenging assumptions about communication by considering largely underexplored topics. Some of these topics become especially relevant for caregivers in general and for those caring for people diagnosed with severe disabilities in particular. In my conclusion, I try to more radically adopt the standpoint of my son Charlie, upon whom all of the chapters draw. Taking inspiration from bell hooks, especially her claim that children escape into their own theories of the world as a refuge, I ask how Charlie might theorize, taking as my starting point one of his more common vocalizations: “mmmmmm.”

... Charlie’s shoes are now on, his home-­signing request to leave the apartment heeded. So let’s follow him out the door and see where we end up.

[ C h a pt er on e ]

Aggressive Stance

We think Jeanne is the one who figured it out. For years we had assumed that Charlie was only pinching us out of anger, until she wondered if it could be a sign of something more, something new. What happens during these outbursts is more or less the same. Charlie approaches, urgently stomping toward me. He leans in, face to face, my forearms firmly in his grip, pinching hard enough to bruise or pierce the skin. He does all of this while glaring directly into my eyes as if trying to gauge a reaction, normally while growling in a high-­pitched whine, jaws clenched tightly onto the collar of his shirt. I wrench free and back away just as his eyes begin welling up, a trickle of snot starting to leak from his nose. I say “no” or “be nice please,” and in response he lets out a throaty exhortation, “Ya ya ya ya!” He chases after me, eager to continue the minor assault, trying to swat my face, pound my shoulders, clutch my hands or forearms to pinch them again. I run in circles, dodge, and evade to tire him out. Eventually, after a hectic and balletic eternity, he calms down. This all just happened. It’s late March 2021, and I have scratches on my hands from this afternoon. Some left gashes so deep I worried I might bleed onto clothes or furniture. It started at the entrance to our building. He was upset for some unknown reason. I now have a small slash on my face below my left eye from where he ripped my COVID-­ conscious face mask off. It looks almost like a thick, light-­red teardrop or a tattoo of a comma. Once he calmed down, I left him with his carer, Rachael, to go teach. I worried that students would ask about the visible wound during my Friday class over Zoom an hour later. I even considered wearing an eye-­patch. “You should see the other guy,” I decided I would joke if it came up, using a familiar (and problematic) American quip valorizing gendered violence, intended to shift attention away from my personal life. They didn’t ask, so I didn’t have to explain. Thank God for that. 25

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Most of the time Charlie repeats the sequence, over and over again, until gradually settling down somewhere between ten and thirty minutes later. We try different things to get him to stop: we ignore him or move away, which only seems to spur him on; we look straight back at him and softly or gruffly admonish “no” or “we don’t hurt [each other],” implorations that he either does not understand or chooses to disregard. Sometimes, out of helpless frustration, we resort to shouting at him, restraining his arms or torso, pleading with him to stop. That is usually followed by Jeanne or me needing to step away to be alone, to cry in desperation, fume in anger, hang our heads hopeless. This chapter is about interpretive gambles of the sort we and Charlie make, where there is no obvious way to know what someone means or whether they mean anything at all. Such epistemic anxiety is arguably common to all communication and interpretation, the fact that we cannot be sure what someone else means or whether we ourselves are properly understood. But that risk is more pronounced in intensive home signing. I explore situations where what could be taken to be an intentional, communicative act is instead undermined, reduced to an automatic, prereflexive behavior. The situations I present include some that involve Charlie and caregivers for people similar to him, but they also relate the undermining of home signs to broader inequalities and dangers involving policing and systemic racism. I do so not only to complicate what lack of speech means but, following bell hooks, to identify how “different kinds of domination are linked systematically to each other.”1 I argue that when a person’s body language appears to speak for them, when it can be decoded for hidden meanings, kinesics and killability can become dangerously intertwined. Here the innovative and idiosyncratic nature of signification adds a level of uncertainty when new signs emerge . . . or don’t. That uncertainty is harder to work through, for Charlie and us, in moments of stress, struggle, and pain. One of the reasons we hadn’t settled on a strategy for dealing with his apparent violence—­besides the fact that our approaches were relatively ineffective—­was that “the pinching” was always brief and infrequent. We tended to interpret these episodes as nothing more than pure aggression, an emotional outburst, a fit or meltdown, an end in itself. Taken in this way, the pinching is not significant beyond something to suffer through and worry over. Will it continue or get worse with puberty? What about when he gets bigger and stronger? Will he hurt someone badly one day, or hurt himself? What about when he is no longer in our care and people who do not love him or understand him are responsible for his well-­being? Some people we know, parents of Charlie’s classmates, say their children are far, far worse. They talk about exhausting

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every antipsychotic cocktail doctors will prescribe and desperately exploring the ever dwindling options available for institutional support. When Charlie pinches and scratches us, it is never just a sign to interpret in the moment—­it is a dreaded omen of even worse things yet to come. There are several reasons why I am beginning this book with a chapter about (what seems like) violence. The first is that it is an important reminder that care involves power, whether we like it or not. This is one of the problems with the term “home signs,” since in English “home” carries connotations of warmth and intimacy between loved ones. But care is not always like that. It can hurt, whether the care is for a child, parent, friend, pet, or farm animal.2 The second reason I begin with this episode is that I want to highlight what is at stake with home signs. Care is fraught and unequal, and so too is the process of recognizing home signs as worthy of interpretation. So when I say that Jeanne is the one who “figured out” that Charlie’s pinching might be something other than a deliberate act of aggression, what I really mean is that she guessed it might be. And part of that gamble was being willing to acknowledge that he is an able communicator, even in the worst of times.3 One night, she isn’t sure of the reason, Jeanne decided to interpret Charlie’s pinching behavior as an innovative home sign. Specifically, she took it to be a gesture for us to imitate, an invitation to “pinch” him back, to squeeze his skin in a similar, yet gentler way. From what we’ve found from googling, the actual squeezing is most similar to anatripsis, the Greek method of massage through friction and rubbing, though it also involves a lot of pressing hard on his fingertips and the tops of his toes. Jeanne’s discovery was made some time ago and has so far proved revolutionary for us. We now routinely give Charlie “squeezes” or “pinches,” as we call them, intensely massaging his arms, fingers and toes, ears, nose, sides, neck, and head almost every single day, whenever he requests it.4 The “violence” is still there, still a possibility. What we once perceived only as aggression hasn’t gone away entirely. It has declined significantly, however, leading us to believe it was not always (or not only) that, but a plea for assistance, a desperate gamble, on Charlie’s part, to be understood and to feel better. Recognizing the difference between nonsigns and signs has had implications for the history of social science. In anthropology, Clifford Geertz’s influential symbolic definition of culture all began with a Gilbert Ryle–­ inspired reflection on the difference between an intentional and meaningful wink and an accidental and meaningless blink.5 People routinely interpret accidental or natural signs as signals or symptoms of underlying motivations or experiences—­think of the conclusions you jump to if you witness someone “unintentionally” blush, sigh, or yawn. Symbols (and,

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by extension, human cultures) are unique, in this scholarly tradition, because they are signs that arbitrarily encode otherwise concealed mental phenomena (such as values, intentions, beliefs, meanings) into publicly accessible and shareable information. The sign is arbitrary because, unlike the relationship between laughter and happiness, there is no intrinsic relationship, apart from learned tradition, between waving a national flag and patriotism. Yet, just because symbols supposedly do this exceedingly well does not mean that there is no other way to engage in intentional, meaningful behavior.6 With home signs, being an interpreter is first of all being confronted with a set of choices, or gambles, based on what a person senses or feels, where it can be impossible to decide, in the end, between taking something for a wink or a blink. This impossibility comes from not knowing for certain whether the winker/blinker intentionally produced the sign. Beyond idealized notions of culture and symbols, other people can still place social demands on you, calling on you to relate as members of a shared world (as reflected, again, in the very term “home sign”). But language can make obvious what is hard to know for sure in other forms of interaction, which is whether something is actually intended as a sign or not or, in some situations, as violence or not.7 More to the point, if some of the parties of a seemingly “violent” encounter cannot build a shared interpretation, then there is a troubling imbalance involved in who gets to label situations or people as violent and who does not. After all, there may be instances when Charlie, and people like him (meaning not only those diagnosed on the autism spectrum, but anyone unable to speak), find situations violent but cannot get others to define the situation that way. It is 10:50 p.m., a Sunday in late April 2020, and Charlie is tapping the side of the couch to get me to come to him, or maybe just to stop typing. He holds a fixed stare in my direction. The chair, his chair, is tilted over. I tipped it forward so that it could dry, after spraying pet stain remover on it for the thousandth time, but also to give him some kind of halfhearted punishment for wetting through his pants again, the second time today. But what is giving me pause, why I write this, is that he is afraid of me. Or, at least, he is capable of being afraid of me. I’ve known this, I’ve seen it before, but now I am writing it down.

Specific bodily harm can result from signs misused or misinterpreted, including when speech is disregarded entirely, or nonverbal communication is interpreted as mere aggressive intent. In fact, the ability to use signs

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in a reflexive way, to be aware of what one means and what others mean and act in accordance with this knowledge, can lead to violence against those who do not meet the criteria or are denied the capacity to speak for and about themselves. These overlapping distinctions can become entangled in unexpected and troubling ways. One can find these tensions encapsulated in the different uses of the phrase aggressive stance. In ethological and kinesic studies, “aggressive stance” means to adopt a posture of potential aggressiveness. In everyday talk among speakers of English, the same expression can mean merely being tenacious or acting with conviction.8 In linguistic anthropology, “stance” indicates a level of awareness about the implications of one’s signing activity.9 In our day-­to-­day lives, we not only take a more or less explicit stance on subjects of interest (politics, interests, values, goals), but also form views on and invest in other people’s stances, including whether they have one at all. I begin this chapter by drawing on linguistic anthropologist Elise Berman. I consider signs as forceful and force as a kind of sign, irrespective of whether they are (mis)recognized as aggression or violence. I say “misrecognized” since, as the case of Charlie’s pinching shows, it may be that a sign consists of forceful action yet can be interpreted as something other or more than violent. More often, though, the tendency is for those with greater privilege and power over life and death to misconstrue their own actions as merely forceful, not violent, and deny the same privilege for those with less power, whose lives are at stake. In these situations, misunderstanding has potentially dire consequence, where ideological assumptions about kinesics inform systemic and specific instances of ableist and racist violence. For example, being deemed incompetent yet potentially aggressive led to systemic abuses of people like Charlie through state welfare operations; this structural and slow violence includes the infamous scandals in New York state, not far from where we live today, specifically around the infamous Willowbrook institution. The postwelfare care regime that currently impacts disabled people in our state is very different, in many ways, yet haunted by this systemic violence of the recent past and the classification of institutionalized populations as dangerous that continues in nonobvious ways today. This continues to have impacts on state, educational and disabled actors, as I will show. In the next section, I shift to consider policing in the United States today and historically as involving a similar yet further racialized semiotic stance in relation to the imagined aggressiveness of apprehended suspects. Not only are people disabled or debilitated by police violence in racialized

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ways, people with diagnosed disabilities are also overrepresented in police-­ related killings and injuries.10 The closure of places like Willowbrook and the general movement toward deinstitutionalization in recent decades has arguably contributed to these troubling statistics. Put simply, people like Charlie once would have been incacerated for life, whereas now they are appearing in public settings more often. Legal scholar Jamelia Morgan points out that police killings of disabled persons are not an incidental byproduct of deinstitutionalization, but that “it is true that the failure to invest in community mental health, social services, and affordable housing following deinstitutionalization created conditions that led to policing and criminalization of disabled people.”11 I show that the gray literature around nonverbal communication in the United States has also played a role in this process, using the example of well-­known psychologist Paul Ekman. Based on his research, generations of officers have been actively trained to interpret potentially intentional signs as natural signals, signals that can be read in a universal and infallible way. From this perspective, our faces and bodies tell the truth even when we do not, especially about supposedly aggressive intent. Scholarly writing and research becomes ideological and institutional support, I argue, for repeated incidents involving disabled persons, where signs of compliance or communication are ignored and subjects are instead rendered aggressively dangerous and killable. In these examples, to see a specific action as a home sign means taking an alternative gamble, to adopt a stance toward other people as capable of creative and intentional communication. It also means, going further, recognizing that these meanings are part of a shared context and that, for this reason, other people—­namely, carers—­are in a better position to interpret their meaning than an armed officer who just arrived on a scene. I conclude by advocating for home signs, for the recognition of shared yet idiosyncratic messages, as opposed to supposedly universal and infallible signals that might betray an aggressive stance. As carers for nonverbal people know, this might mean routinely overinterpreting agency in people’s actions, imagining that even the simplest could be rethought as a home sign awaiting a response.

Force Signs Violence may well be the only form of human action by which it is possible to have relatively predictable effects on the actions of another person about whom you understand nothing. David Graeber12

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For anything to be a gamble, interpretive or otherwise, there have to be stakes. And there are arguably no greater stakes in our lives as users of signs than when violence, pain, and suffering are involved. In anthropology, despite an emphasis on meaning and cultural difference generally, there is an overwhelming tendency to regard violence as a form of action that exists in some sense outside of symbolic representation or, seen differently (as in the epigraph to this section), one that communicates in a bodily medium that transcends cultural or linguistic d ­ ifference.13 This is not only about overly materialist depictions of violence (as if it could not be interpreted as anything other than what it literally is), but also about idealist notions of how words relate to the world. These twin biases are evident in popular sayings I heard growing up, such as “sticks and stones will break my bones, but words will never hurt me” or “the pen is mightier than the sword.” Setting aside their poetic parallelism, or their common historical origin in nineteenth-­century English literature, these sayings suggest both that language is immaterial and nonbodily (“words will never hurt me”) and at the same time that language is more powerful perhaps for this very reason (“the pen is mightier”). If physical force and signs are not impactful in the same way, even for English speakers this distinction between aggression, or mere physical harm through force (sticks and stones, and swords), and symbolic violence (the mighty pen) appears to blur in some circumstances. In the most basic sense, both force and the threat of force may serve as acts of nonverbal communication. What they are taken to communicate, however, can vary wildly. Threatening acts constitute one dimension of what linguistic anthropologist Elise Berman calls force signs: “force speech and other signs that index force.”14 Berman’s fieldwork in the Marshall Islands is important and unique, in part, because it focuses on how family relationships often involve reference to force, both implicit and explicit, and because she makes clear that this does not equate to some overly simplified notion of “child abuse.” To index force means to suggest or imply it, which can be done, for instance, by screaming, cursing, or gesturing wildly, or by issuing a threat that is directed at specific people present. Indexing force can also be done through literal physical contact, such as charging toward someone as if to strike. For many people, force signs are also routinely gendered, as are acts of violence in general.15 For instance, on television and in everyday life a common force sign characteristic of heteronormative American households (though not the household I grew up in) is the expression “wait until your father comes home!” This subtly points to gendered punishment, which is effective enough as a force-­significant threat, in a virtual guise, even if it never comes to pass.

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It’s still that late night in April 2020. He is afraid of me. I can no longer refuse his taps on the couch. It’s time to reconcile, so I join him, my laptop in tow, and now type on it one-­handed. It’s hard to do. He wants me to squeeze one, then another finger, sitting alongside him while he looks forward and hums. I wrap my right fist around the individual fingers of his left hand like a tightly gripped pencil, or I press the tips, as if the fingernails were coming unglued and needed encouragement to remain attached. He guides my hand to pinch his nose closed, then the lobe of his ear, his shoulder, fingers again. I stick a finger in his ear, massage his foot, fingers again. Twenty minutes pass, and he still hums as I sit beside him on the couch, distressed, asking for me to pinch him.

Accounts of nonverbal communication do not ordinarily include, let alone start with, violence. If scholars of nonverbal behavior share anything, it is a compulsion to place this subject on a more solid footing, as a legitimate semiotic phenomenon and field of investigation, not to find new ways to cast it as somehow worse than formal spoken language. And yet, acts of violence are some of the most easily recognizable moments where information can be passed on in the absence of a shared code, which gets us closer to what makes home signs distinct as communicative acts. This is why it is valuable to think in terms of force signs that may or may not be interpreted as violence, since this leaves room for innovative sign use and interpretation. When I say “shared code,” to be clear, I mean one that was culturally learned or inherited as a result of evolutionary history. On the one hand, if a person has trained their body in self-­defense or in a professional sport, such as boxing, they may be equipped with a formal cultural repertoire, a kinesic code to fall back on when they feel threatened with physical force. On the other hand, without specific training, behavioral responses to violence may appear to be relatively uniform, suggesting that another, hidden cognitive process is at work beneath the level of conscious awareness. One of the things that makes violence difficult to talk about, as nonverbal communication, is a tendency to mischaracterize body talk (as has been done over the centuries) as animalistic and sloppy, driven by natural urges and unconscious reflex. This is encapsulated in one of the most widely known idioms from behavioral biology, the idea of an automatic “flight or fight response” that kicks into gear when an organism is threatened with force signs and, critically, before they are able to even think and express what they are feeling as an “emotion.” Walter Cannon was a student of William James and an early

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critic of the latter’s approach to human feeling.16 James argued throughout his work that feelings (our lived experiences) are not absolutely distinct from higher level reasoning, but continuous with them. As a result, the verbal categories we have to describe emotions are not determined, but nevertheless are made possible, by means of bodily sensations. Cannon disagreed, arguing in a sense that we are divided from within. He coined the term “flight or fight” as a result of trying to show this experimentally with animals that he rendered disabled. Cannon first maimed cats by surgically severing their spinal cords and vagus nerves, then presented them with (also deliberately impaired and incapacitated) dogs. When the cats reacted to this threatening stimulus in a typical, bodily way (hissing, hair standing on end), Cannon assumed that precortical cognitive systems were responsible for automating such responses. In other words, cats had evolved an unconscious and instinctive body language, one that they acted out when threatened without their higher brain functions entering into the picture at all. The corollary to this was that anyone could read a cat’s behavior if they knew what to look for. I grew up with this idea, though we applied it to dogs, which many ­people owned where I was raised, in rural New York. I distinctly remember using a shared, but very specific, force sign scheme when we had to go door to door as kids, normally selling things for school or the Boy or Girl Scouts. At some point, I was taught that the way you knew a dog was potentially nervous in your presence was by observing its stance. It all started with the tail. If the tail was up and wagging, you were likely fine, but if it was rigid between the dog’s legs, you shouldn’t get too close because more obvious signs of aggression would soon follow: lips would curl back to reveal teeth, hair would stand on end, and the dog would growl and bark, perhaps culminating in a physical attack. Being prepared with this information felt all the more necessary because of what we were routinely told about the semiotic skills of dogs (and “animals” in general), specifically, that they could “smell fear.” Whatever may be true about canine semiotics, this claim is ­challenging not only because New Yorkers tend to think that we can’t smell emotions, but also because (in keeping with learned Christian traditions many centuries old) we tend to think we can’t control them, either. Thus, by implication, in the imagined dog’s mind, we are potentially always revealing too much, showing inadvertent signs of how we’re really feeling underneath and how we might act toward them. Knowing what a dog was (perhaps unintentionally) doing with its tail was not only a way to reduce uncertainty regarding their potentially aggressive intentions but also, by reducing one’s own fear in the process, further limiting the dog’s ability to understand your concealed feelings. Put another way, by taking note of the dog’s tail, you

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settle your own nerves, hide your own virtual “tail” from view (that is, the frightened emotions the dog can sense, that might give you away), and gain mastery in the nonverbal encounter. Partly for this reason we have never gotten Charlie a dog, though many people over the years have encouraged us to do so for emotional or practical support. I do not think I could use home signs to explain to Charlie how to “read” animals, not the way I was taught, at least. He might come up with his own clues over time about how to interpret the dog’s behavior, but he might unintentionally be bitten before he figured things out for himself. Maybe I am being unfair. Maybe a well-­ trained canine could become a partner in home-­signing exchanges or Charlie could teach them better than I imagine, but they would have to be integrated into our everyday lives first. And I know from Charlie how violence can arise from misunderstanding or at least how a communicative act can be misunderstood as violence.

It is not hard to find pet advice online that makes reference to Cannon’s ideas. On the website Pet Acoustics, for instance, one reads: Living in partnership with a dog or a cat, one can witness moments of flight as simple as a response to the sound of a plastic cup dropping on a kitchen floor. [Cannon’s] theory states that animals react to threats with a general discharge of the sympathetic nervous system, preparing the animal for fighting or fleeing. The hormones estrogen, testosterone, and cortisol, as well as the neurotransmitters dopamine and serotonin, also reflect how organisms react to stress in animals.

While the author goes on to say that “the phrase fight or flight has been part of our culture in the way that we describe canine stress behaviors,” they also add that not all behaviors dogs engage in can be reduced to this underlying process. Here it is useful to mention what anthropologist Eduardo Kohn calls “trans-­species pidgins,” a more-­than-­human home sign, by which dogs and those familiar with them can develop their own way of communicating outside of seemingly evolved patterns of behavior.17 Indeed, while Cannon’s argument rests on some problematic neurobiological assumptions, it still tells us something significant.18 If the study of nonverbal communication does not normally involve the problem of violence, discussions of reactions to violent and traumatic situations definitely rely on disabled animals and people. In fact, one criticism of Cannon’s work, and that of his student and ardent supporter Philip Bard, was their use of brain-­damaged cats and

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dogs to make universal arguments about all mammals, including especially human beings.19 Regardless of whether a fight or flight response exists, and the evidence is mixed, it is perhaps better said that neither a force sign nor force is communicative per se, but that it initiates the beginning of an interpretive or semiotic process. This process is only completed when the one experiencing or expecting harm reacts in some way. In many instances that reaction (what in Peircean semiotics would be called the “interpretant”) could be the outcome of a shared script or code. For example, someone might dodge a blow because they have learned a cultural practice like self-­defense or they might do so for entirely unconscious and instinctive reasons that evolved over time so organisms could avoid pain and injury. But home signs, at the boundary of any shared codes, are not clearly passed down through tradition or biology. They are important because they reveal the uneasiness and even dread that can arise when exclusively human language is left to one side or left behind entirely. In my childhood, what I thought gave me an advantage over dogs was that I could adopt a stance toward their body language and, in so doing, gird myself against how they would interpret my own. More to the point, the dogs seemingly could not do this—­I thought they were fixed in the same patterns of behavior, unable to adopt a new stance (every new dog I met, I assumed, would use its tail just the same to tell on itself ).20 This capacity for adjusting human actions explains why, where I live now, for example, if a person attacks a dog unprovoked, then the human is likely to blame because they are willfully committing a crime and therefore must be punished. This is meant, in theory, both to guarantee that they will learn from their mistake and also to send a message to other humans not to abuse animals. If a dog attacks a person, by contrast, the animal is not to blame, is innocent of sin, but nevertheless should probably be euthanized anyway since it cannot will itself to change as the punished human can. It is a dog that bites, forever. Of course, that all-­too-­human possibility of changing one’s behavior is hardly as freeing or exalting as it sounds, as it also leads to guilt, anxiety, and regret. I got extra upset this time when he wet through because I was having some time to myself, my usual nightly shower and facial treatment to stave off dandruff and acne, respectively, now accompanied by my short “sitz” bath in warm water to treat the anal fissures I developed in my late thirties when I started eating less fat and more protein (able-­ bodied? me?). This time is harder to come by lately, with school out indefinitely in the midst of the COVID-­19 pandemic. Maybe I took a minute or two longer for myself than I should have. Whatever the cause,

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when I saw he’d peed through again, I got upset. I think what triggered me was when he laughed, possibly out of nervousness, a little giggle, when the stain on the chair was discovered. That’s when I yanked his iPad away from him and tossed it in his room angrily. Then it happened. He flinched as I approached him, raising his arms slightly in a defensive position and looking alarmed, as if I was going to strike him.

Comparing the example of aggressive dogs to the one with which I began, it becomes clear that there are at least two sets of oppositions that come into play where aggression is concerned. The first concerns Charlie’s pinching, which I discussed at the start of this chapter: any forceful act or force sign may be (wrongly) considered utterly distinct from intentional sign behavior. The second opposition holds aggression as different from violence, with the latter tending to mean, for scientists of humans and nonhumans, performative or gratuitous aggression. Distinguishing between aggression and violence thus tends to hinge, in the literature, on the sense that the latter constitutes an intentional and meaningful event that goes beyond the mere behavior of a dog barking at someone in fear or hunting its prey. By virtue of its connection with exclusively human capacities for meaning and moral judgment, violence is often taken to have a much broader extension, even beyond the threat of physical attack—­the might of the pen in a different form. Biological anthropologist Robin Nelson argues that such a broader understanding of violence ought to be taken up more, but has been hampered by a scholarly focus on physical assault exclusively, neglecting forms of structural and slow violence that are more systemic and yet still embodied (through the stress that comes from traumatic experiences of sexism, racism, and ableism, for example).21 Force signs may not hurt in an obvious way, but one’s pain receptors (or, rather, the cell memory in them) may nonetheless hear the threat of force loud and clear, triggering stress levels to increase: Then it happened. He flinched as I approached him, raising his arms slightly in a defensive position and looking alarmed, as if I was going to strike him.

In situations that exhibit violence, the supposedly clear divide between intentional communication and unintentional behavior (wink and blink) is deeply entangled, whether what occurs is enraged attack or what appears to be a flight or fight response.22 Like force itself, force signs arguably communicate on some level nonverbally and sub-­subjectively. That makes force signs not natural or automatic, but rather something we learn as we grow in and through specific environments and relationships.

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With the notable exceptions of martial arts or contact sports, bodies are ordinarily entrained to avoid forceful encounters whenever possible. Indeed, the whole point of corporal punishment (“wait until your father comes home”) is to serve as a force sign that will make unacceptable behavior discontinue, normally as part of entraining other beings ideologically categorized as “lesser” (animals, children, women, slaves). As I write this, I am choking back tears. Maybe he remembers, years ago, when I was even worse-­tempered. When similar incidents happened in the past I would clap at him aggressively, all but shove him in the direction of bathrooms and, once or twice, deliver a firm spank to his rear end. At the time I thought to myself, “how else is he going to learn I was disappointed, that he needs to do better?” That was bullshit. How else was I going to process my anger? How else was I going to get release from all these emotions of failure, guilt, fear, dread. If that’s why he’s flinching today, right now, then I’ve taught him to anticipate aggression when adults get upset. I’ve taught him that he should expect to feel unsafe in his own home, around people who take care of him. I hate myself.

And yet, force signs can also be subject to contestation or reinterpretation. It may be that force is believed necessary for a higher end, as is the case with the familiar and familial spanking of children, which, where I grew up and where I am raising my son now, can take on home-­sign-­like specificity in the way different households do or do not engage in kinesic acts of corporal punishment. It is all but assumed, in fact, that each home has its own idiosyncratic approach to violence, corporal or otherwise, including what one can do to oneself and others, and what can be watched on screens or practiced on animals in the form of hunting or husbandry. It may be, as the example of Charlie’s pinching shows, that default assumptions that some members of a household have about what force means, and what it communicates, need to be rethought in order to make possible altogether new ways of relating.

Force Signs and Care Work In all these relationships, the power the dominant party exercises is maintained by the threat (acted upon or not) that abusive punishment, physical or psychological, could be used if the hierarchical structure is threatened. bell hooks23

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Over the course of a decade, Charlie has attended two different schools in the greater Binghamton area, one a special school for children whose needs can’t be met by the regular school district (but mostly populated by children between the ages of six and eleven with an autism diagnosis), the other a special program located in Boards of Cooperative Educational Services (BOCES, pronounced “bo-­sees”). Many of the people I interviewed and got to know for this book, though not all, had experiences at New York’s BOCES institutions, which are dispersed in the large swaths of rural and exurban New York state away from the metropolitan centers of New York City, Buffalo, Rochester, Syracuse, and Yonkers. BOCES provide services for a diverse pool of students whose needs are not met in the ordinary public school system and, by virtue of their relative geographic isolation, are lacking in overall options and resources.24 While the level of violence in a household varies across households, the development of a shared kinesic code demands that each new generation be taught more or less similar body language. If any child may be subjected to force signs in the context of their upbringing and education, some prove to be “nonassimilators,” in Birdwhistell’s terms, who “may be given special institutional treatment” as a result. The child is born into a society already keyed for his coming. A system exists into which he must be assimilated if the society is to sustain itself. If his behavior cannot, after a period of time, become predictable to a degree expected in that society, he must be specially treated. In some societies the nonassimilator will be allowed to die; in others he may be given special institutional treatment. This special treatment can range from deification to incarceration.25

What Birdwhistell does not say is how unpredictable, nonassimilating behavior in others is often associated with dangerousness and possible threat. Debbie, a white, middle-­aged caregiver, offered a clear example early in our first interview, when she recounted hearing first about disabled people, as a high school student on Long Island, after a care home was opened in her community and she heard neighbors openly worry that “people are going to get out and rape our children!” No one did anything to stop the opening of the care home, she says, but people would still routinely refer to “that place with the crazies up on the hill” in everyday conversation, illustrating some of the ordinary ways that disability is rhetorically appropriated to subtly police and reinforce compulsory able-­bodiedness and able-­mindedness. For centuries, disabled people were treated to the

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same white supremacist scripts that cast Black people as hyperaggressive and hypersexual, which helped to underwrite acts of dehumanization that constitute violence in the social and systemic sense. “The insidious and ubiquitous nature of the structural violence faced by people with [intellectual/developmental disabilities] makes this form of violence particularly difficult to address,” Jennifer Sarrett writes.26 Dual processes of what Seshadri-­Crooks calls animalization and dehumanization were central to the work of state organizations seeking to manage and contain those diagnosed with severe disabilities.27 This involved violence called by other names, for instance, institutionalization. In New York state, violence against disabled persons has played a central role in the formation of institutions and practices that echo through our daily lives today. The trace of past scandals endures, such as the notorious Willowbrook school in operation on Staten Island, then outside New York City, from 1947 to 1987. Beyond the public shock surrounding this institution—­the public exposure of which launched both disability reforms and television journalism—­a major moment in the history of American disability care, in general, came when the increasingly marked term “mental retardation,” entirely based on so-­called IQ tests, was enveloped by the broader term “developmental disabilities.”28 Renaming as an act of care—­ the supposedly mightier pen at work again. Today, Charlie’s support outside of school is organized by New York’s Office for Persons with Developmental Disabilities (OPWDD). OPWDD’s predecessor was the Office of Mental Retardation and Developmental Disabilities (OMRDD, created in 1978). At that time, OMRDD was considered a central component of the critical apparatus that was meant to deal with the fallout from the Willowbrook scandal. There are still people in New York who were taken out of Willowbrook decades ago and needed new places to go. At least two, now in their sixties, are residents of a local facility in the Southern Tier where I interviewed some of the staff (see chapter 4). While in this chapter I focus mostly on how Willowbrook haunts the present in the form of policies and practices around violence, it is important to recognize that it also has a legacy in the bodies and minds of survivors who were spread throughout New York’s system in the aftermath of the scandal. At Charlie’s BOCES in Binghamton (where he had no choice but to go), the problems are different than at Willowbrook, even though the context had similar dynamics at play, namely, a need for care for a segment of New York children, a need for trained staff ready to handle difficult cases, and a need for state support and oversight. BOCES programs are approved and funded by specific districts, but their budgets depend on aid from New York

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state. Support from Albany has been greatly reduced over the last decade, with statewide budget shortfalls leading to programs being closed throughout the state, despite growing need for them, especially programs for early intervention.29 The impact of these funding cuts is uneven, mainly because BOCES students include those getting more technically oriented high school educations as well as those with additional behavioral, physical, and/or psychological needs. A strict divide separates the corridors and classrooms of Charlie’s school that serve supposedly able-­bodied and able-­minded students from the parts of the school that serve people with acknowledged and diagnosed disabilities. Moreover, the combination of dwindling resources and the demands of educating children who may exhibit behavioral outbursts leads to a significant amount of employee turnover. Four of the people we have hired to watch Charlie at home over the years (two of whom I interviewed for this book, Jessie and Camryn) agreed to watch Charlie in part to earn extra money to make up for their inadequate pay, but also in part because to them his aggressive behaviors are very rare and not at all severe, in comparison to other children they have worked with at BOCES. In other words, they explicitly, though only partly, frame the challenge of working in special education as one of having to cope with physical aggression for relatively low pay (for most newer employees, scarcely better than minimum wage). Camryn is a tall, white man in his early twenties. Somewhat expressionless, with a flat affect, Camryn always struck Jeanne and me as at once extremely sensitive (given how quickly he got to know Charlie) and somewhat detached. We learned, over time, that despite his occasional lateness and forgetfulness, he was one of the people who seemed to get closest to Charlie. Perhaps it was because of his lack of expressiveness, so that Charlie could more easily read Camryn’s signs. Had Camryn learned to be intentionally less expressive to be better at this job? I failed to ask him that. Importantly, Camryn was up for anything: taking Charlie swimming or to hockey, or endlessly driving him around . . . and he knew when Charlie wanted to do any one of these things or none of them. Maybe due to his own physical size, Camryn was seemingly unbothered by the occasionally, physically demanding challenges of working with our son—­though this was at least partly due to his experience at BOCES. In special needs classrooms, according to Camryn, there is a divide of staff, in terms of pay and skill, between teachers and aides, on the one hand, and monitors, on the other. Generally speaking, this divide is also gendered, with a greater proportion of men among monitors (though women predominate in most settings, in keeping with global trends in education);30

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moreover, monitors generally earn more than do aides. As Camryn puts it, this primary divide in staff skill, pay, and identity is fundamentally about whether or not a BOCES employee can be “hands on” with the students or not. Aides and teachers cannot touch the students, at least, not in a way that involves forcing them to comply when they are exhibiting nonassimilable “behaviors” that call for removal or restraint. Such behaviors can involve, for instance, physically transporting a student in mid-­meltdown from the classroom and taking them to a place where they can act out alone without fear of harming themselves or others. Monitors respond to and make use of force signs; such behavior calls monitors to action, enacting and providing justification for the division of labor that underlies BOCES special education. In other words, supposed meltdowns initiate established protocols, but if they are a source for new home signs, it is in and through force. Any monitor will tell you that they learn to manage individual students differently depending on the way they act out, what sets them off, what calms them down. Put differently, what matters are the relationships they form with specific people and not the broader underlying moral or ethical ideals.31 Jodie, another care worker whom I interviewed, is a middle-­ aged white woman. She works not at BOCES but at a different local facility for special needs adults (most of whom are in their sixties). For more than a decade, Jodie has trained people in crisis intervention and prevention, which once included a big focus on “takedowns and wraps,” though these have gradually lost favor over time. When I asked why, she explained: The takedowns and wraps you can get hurt . . . anybody can, both sides. Because if a person is truly in crisis, and you need to do like a two-­person takedown, it’s dangerous because you guys could fall to the floor. I mean in a perfect world, if you do it the way that you’re taught . . . [but] when we’re teaching, the person’s not squirming, trying to kick you, trying to hit you, trying to bite you. So there is just so much that could go wrong.

Like Camryn, Jodie explained that she learned over time how to avoid conflict altogether or to calm people without using physical means. I’ve been kicked a bit, punched, scratched, but it’s come a long way, working in the field so long, I’ve learned to use words, verbal calming. Some people you can’t, it just depends on the crisis. With experience comes . . . you’re able to see warning signs where you work with a person, where you know the person, where they’re going to be comfortable with you.

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Jodie thinks that building mutual comfort, knowledge, and trust takes at least a few months, if someone has the necessary experience. How anyone reacts to seemingly “violent” situations is partly molded by their experience. To varying degrees, employees are familiar with material and semiotic abuse in their own lives, sometimes intersecting with disability, gender, and class. Camryn actually had childhood experience with aggression from and toward people diagnosed as on the autism spectrum, long before he was paid to handle situations like this. He describes his brother as having Asperger’s Syndrome and “a very very short fuse”; if “someone said something to him he took it the wrong way,” while “call[ing] him out on something” sometimes meant getting “punched, slapped, kicked . . . things thrown at me.” Camryn also had to learn not to respond in kind, partly out of recognition of his brother’s difficulties: “I just dealt with [it], I had an idea that [he] was different.” He also recounted, in his familiar flat tone, a time his brother was viciously assaulted by classmates whose violent rejection of neurodiversity, in Camryn’s view, was implicitly supported by the school district when it allowed them to escape ­punishment. As a monitor, Camryn has experienced the same range of physical abuses from students of different ages, sizes, and intersectional identities.32 Broadly speaking, this familiar (and familial) abuse was part of what eventually made him want to leave BOCES, which he did, though he continued to work with Charlie for a time (until he found a more stable, higher paying job at Walmart) and still often manages outbursts from his brother. Talking about violence suffered at work with special needs students is uncomfortable, and Camryn was quick to point out that this is not all he did at BOCES and was not the only reason he left. But, as Christine Kelly puts it, “discomfort . . . cannot erase the reality that violence and oppression are inextricably a part of care.”33 In my view, what Camryn sees as the necessity of taking abuse, for (slightly better paid, often but not always male) monitors, and the impossibility of forceful touch, for (slightly worse paid, more often female) aides, is best understood as the outcome of a central institutional ethos. This is the purification of any signs of force from education such that an entire class of separate workers is required to enforce the boundary. That is what monitors are for, specifically, force signing. This demonstrates how aggressive behavior is separated out as nonpedagogical and, by extension, anathema to the broader value of student growth in communication and social interaction.34 Despite receiving glowing reviews from his carers, ever since he began school in London more than a decade ago, Charlie’s behavior has

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sometimes been labeled as “aggressive,” with all the settled assumptions about intent that this can entail. In the process, what could be seen as a gesture to be imitated instead is logically reversed as something he is doing to others that he would not want to have done to himself or to feel for himself. In the contexts of care and education that I consider in this book, disciplining sign use and defining what counts as a sign happens in conjunction with restrictions on the implementation and definition of what counts as violence, whether by or against students or clients. We rarely get report cards for Charlie—­or, to be clear, they are effectively meaningless, given the kinds of pedagogical lessons and challenges that Charlie is presented with. One bit of meaningful information we get in parent–­teacher conferences, and one document we do receive on a semi-­ regular basis in the mail, has to do with aggressive behavior. Charlie might pinch, hit, kick, or pull hair when he has these episodes. But we are not present for them, and, as a result, we are always left wondering what he might have been trying to say. Forceful actions that harm also communicate messages, and not only when they bruise and break the skin. Even if carers, schoolteachers, and aides agree that parents like us should discourage such behavior, it does convey information that may or may not be heeded. And yet, certain acts of forceful harm may not be taken to be violence at all if intent to do harm cannot be established. In these cases, the behavior might instead be regarded as an uncontrollable outburst or lashing out. While as a parent I am glad that people like Charlie are not automatically evaluated as if they were intentionally violent, this is problematic if it also undercuts the possibility of other intentional messages. In the care situations in my home and at BOCES, a child’s seemingly aggressive actions may be ambiguous with regard to intent. Whether or not violence itself is nonsymbolic on some level, uses and definitions of violence haunt accounts of people deemed “languageless” in many ways.35 Denying that someone is trying to say something, in many instances, is a step toward dehumanizing them and making them killable, that is, a step toward denying that they are a someone at all. The current system of education was born of a humanitarian crisis. As explained, OPWDD was itself invented on the back of publicly revealed horrors like Willowbrook and the rise of a more palatable form of disability justice activism than had emerged previously (meaning generally white and liberal).36 BOCES, similarly, is structured around carefully dividing physical confrontations with students from their education, behavioral outbursts from acceptable discourse. There are some good reasons for this, of course: protecting students and staff from harm is an important goal. And yet,

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attempting to purify nonassimilable behavior from learning situations is, in my experience at least, impossible in practice, and it may foreclose new opportunities for home signing. A school is not like a home, Charlie’s teachers might respond. Fair enough, but maybe it should be.

The Wrong Impression: Policing Body Language Body language is liable to be misread or misunderstood in any exaggerated power relationship, where oppressed and debilitated (un)persons may be robbed of voice even if they can speak. This is a form of symbolic violence that can lead to further physical harms. It’s 5:35 p.m. on a Friday in July 2021, meaning I am doing no teaching, very little administrating or advising, and am left to write, provided someone else watches my son. Right now Charlie is home with a middle-­aged white woman who just started working for us. I will call her “June.” This is only her third day alone with him, and I keep checking my text messages, in between writing these sentences, to see if she has an update. I wouldn’t normally do that, but two hours ago June called me with panic in her voice while I was working in a local café. “I need your help, please come back,” she said. It was hard to understand much more from her than that, but I could make out what sounded like his distressed sounds, other people talking, and “ow, no” in the background. I alternated between running and walking the half-­mile distance back home, concerned about what this all meant, my laptop case slung over my shoulder, flopping erratically as I went. Was he okay? Was she? Was this it—­the meltdown that would make her quit?

On July 18, 2016, a man diagnosed as on the autism spectrum, Arnaldo Rios Soto, ran away from his group home in North Miami, Florida, with his toy truck and promptly sat in the street to play. One of his carers, a Black man named Charles Kinsey, followed Soto to retrieve him, but it happened that police officers were already in the area responding to a different situation. Things escalated, according to the police, because they wrongly believed the truck was a weapon and that Kinsey was in danger. Fearing for his companion, Kinsey initiated a set of familiar nonverbal cues meant to calm officers’ nerves: he lay down on his back and put his hands in the air. It did not work. While lying there Kinsey was shot in the leg by a SWAT team member, which surprised him and felt “like a mosquito bite,” he later told reporters. In cellphone footage of the incident, Kinsey can be plainly

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heard saying “Hands up! Don’t shoot!” and “All he has is a toy truck. A toy truck. I am a behavioral therapist at a group home!” Witnesses also confirm his telling police on the scene that there was no gun and that Soto was not only disabled but nonverbal and did not understand the orders shouted at him. The officer who fired claimed he was aiming at Soto, not Kinsey, and though the tragic absurdity of shooting a Black man who was lying down on the ground understandably gained most of the media attention, the fact that a home-­signing Hispanic person who could not comply with verbal instruction led to shots being fired, marking Soto as a legitimate target, makes clear the life-­or-­death stakes of misinterpretation and misattribution of violent intent. When I finally got home there were two police cars and a crowd of half a dozen people encircling Charlie in the parking lot. I did not know any of them and did not immediately see June anywhere. Charlie immediately came to me and, unable to say thank you or offer an explanation to the people present, we went back upstairs. Once there he sat with me on the couch, asking me to pinch his fingers as normal, no aggression to speak of.

In a discussion of the Soto incident, Brittany Aronson and Mildred Boveda make clear how white supremacy intersects with what they call the “educational industrial complex” in the media debate over the issue.37 Specifically, they highlight the political strategy of the local police chief, who attempted to downplay the relationship of the shooting to systemic white supremacy by describing Soto as “a white man” and thus disavowing his marked ethnic identity (despite the fact that the person who called in the incident referred to him several times as “Spanish” in the call). Similarly, Aronson and Boveda point out that different shooting victims may only be represented as “Black” when intersectional identities of masculinity and dis/ability are more or less present, dramatically influencing possible outcomes. Following critical pedagogical theory, they and other scholars are interested in examining how these forms of state-­backed violence intersect with for-­profit education and care. My focus here, however, is a relatively unacknowledged relationship between policing, nonverbal communication, and what has been described as the “military-­industrial-­ academic complex.”38 The Soto incident shows quite plainly that kinesics can get you killed. In fact, decoded nonverbal communication can be considered such a strong indicator of one’s hidden intentions that words may be ignored altogether by those with the power to kill without consequence. The spoken words “All he has is a toy truck” or “I can’t breathe” are a case in point.

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I later learned from June that Charlie seemingly got confused about which vehicle was hers (something that can happen as we swap shifts between four caregivers in order to integrate two new people, June among them). In the ensuing confusion, he wouldn’t get out of the street, and bystanders came to help as he repeatedly pinched June in aggravation, leaving large purple welts up and down her slender arms. The police had only just arrived at the same time that I did, and I never spoke with them. June later joined us back in the apartment, and I met with her in the hall so as not to disturb Charlie again with our discussion. She was crying and apologetic, promising to do better with him, which took me off guard. I did my best to console her and to plan, with Jeanne, how to avoid this behavior in the future. But Charlie did not get hurt. We did not lose a new caregiver, not yet. Things are okay for now, I tell myself, two hours later, in the lobby not far from where it all happened, Charlie and June just four floors up. But my heart is still pounding, and I have a sick feeling in my gut. I check my phone again.

Members of the American police and the military are actually specifically trained to distrust what people say and to focus on the intentions encoded in their nonverbal behavior, which is thought to be a better indication of how to respond in situations of interrogation or conflict. Better said, they are trained to disregard what certain people say, notably those formally or informally classified as suspects, criminals, the enemy, and to focus instead on their bodily communication. This allows us to see these all-­too-­familiar situations in a different way, as bad nonverbal communication. A Florida SWAT team encounters a Hispanic individual sitting in the street with a toy truck. Suddenly an entrained mind-­reading skill kicks in—­words lose value and bodily actions become a secret hieroglyphic that officers are trained to interpret. If systemic racism and ableism present some people as “other,” as “nonassimilable,” then how specific officers “read the situation” can translate the potential for implicit biases into literal injury or death. In the aftermath, it is not possible to know for certain what those involved in such horrifying incidents were thinking. What we can know, however, is what police training consists of when it comes to reading nonverbal cues. Put simply, we know police training typically does not include learning about the cultural variability in kinesic communication, or about how easily power relations can distort the messages that body language appears to send. More important for the purposes of this book, officers are not placing

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trust in home-­signing relationships between nonverbal people and their caregivers and familiars. Kinsey should not have been a target, but more than that, he should have been recognized as a resource, the only person who had a handle on the situation. Instead an officer gave privilege to their own mind-­reading abilities and what was perceived to be an aggressive stance was met with life-­threatening violence. For the last half-­century police and military training has relied primarily on a literature that universalizes kinesics as a species-­level body language, obviating differences in intersectional identity and experience. One of the leading contributors to carceral approaches in this regard has been world-­ renowned researcher Paul Ekman. Ekman is credited, among other things, with deliberately supplanting Birdwhistell’s kinesic paradigm in the mid-­ twentieth century in favor of a neo-­Darwinian emphasis on instinctive or natural bodily signals. Specifically, Ekman built his scholarly reputation through reductionist sociobiological approaches in order to make universal, cross-­cultural or anticultural claims about facial expressions. Inspired by Darwin’s The Expression of Emotions in Men and Animals, over the years Ekman and his team have argued that there is a finite set of basic emotions (anger, fear, disgust, happiness, sadness, surprise . . .) and that these are indicated with a fixed repertoire of facial markers that individuals adopt unconsciously and instinctively. Disgust, for instance, is linked with an upturned lip and wrinkled nose and eyes, as if the person is about to vomit, which evolutionist scholars have taken to be a surviving trait (the equivalent of the human appendix) that inadvertently points, not only to the universal affect “disgust,” but to the selective origins and adaptive function of disgust (that is, to eliminate potentially harmful substances from the digestive system). While linked with other affective states, for Ekman’s research team, there is a formal distinction worth making between the face as a site of universal nonverbal “tells” that give away what people are really feeling, and all other kinesic acts involving bodily stance, gesture, and so on. Setting aside their purported evolutionary origins, for Ekman and his research team facial expressions are critically involuntary and unconscious, and thus, unlike words, have clear meaning—­which means they can be trusted, with a one-­to-­one mapping between what a person is feeling and what they show others.39 This is a modern version of Cannon’s take on emotions—­facial expressions as a byproduct of precortical processes. In Ekman’s hands, all people become like dogs with their tails showing. Ekman’s research on facial expressions has not held up under later scrutiny, as cross-­cultural researchers have shown more variety in facial expression and in affective experience than Ekman assumed through the experimental “snapshot method” he used.40 I am less interested in

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these contentious claims about the origins of facial expressions, and more concerned with the military-­industrial-­academic complex and the prison-­industrial complex, to which Ekman’s work has contributed and Birdwhistell’s kinesic alternative seemingly has not. It might be tempting to imagine, in fact, an alternative world—­one without funding from the US Department of Defense and police backing Ekman’s laboratory initiatives—­ that would have left more room for kinesics rather than all but wiping it from scholarly genealogies. Ekman did not disprove Birdwhistell, per se, so much as he out-­earned him in grant money and used the connections he formed to successfully promote an alternative worldview about human communication. This was a view, it needs to be said, that was also more attractive for the projects of American empire and the national security state.41 Based on theories of “demeanor” as a clue to interpreting nonverbally communicated truths, for example, the Ekman group contracts with military and police to teach them how to spot liars and detect aggression. Ekman’s latest research focuses on “lie-­catching” through what he and others call “micro-­expressions,” inspiring an emergent field of semiotic power plays where computers are being designed and tested on the same premise—­ searching for a universal facial language of expression without words.42 In this endeavor, Ekman’s mind readers are armed not only with guns, but also with the assumption that nonverbal expressions have no ambiguity, if only they are interpreted correctly. But by whom and against whom?43 In fairness, Ekman has expressed concern about what could be done with his research. In a short, somewhat dystopian piece in the Wall Street Journal in 2015, journalists Elizabeth Dwoskin and Evelyn M. Rusli put this rather bluntly: Paul Ekman, perhaps the world’s most famous face reader, fears he has created a monster. The 80-­year-­old psychologist pioneered the study of facial expressions in the 1970s, creating a catalog of more than 5,000 muscle movements to show how the subtlest wrinkling of the nose or lift of an eyebrow reveal hidden emotions. Now, a group of young companies with names like Emotient Inc., Affectiva Inc. and Eyeris are using Dr. Ekman’s research as the backbone of a technology that relies on algorithms to analyze people’s faces and potentially discover their deepest feelings. Collectively, they are amassing an enormous visual database of human emotions, seeking patterns that can predict emotional reactions and behavior on a massive scale. Dr. Ekman, who agreed to become an adviser to Emotient, says he is torn between the potential power of all this data and the need to ensure it is used responsibly, without infringing on personal privacy.44

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While Ekman’s concerns about privacy show some awareness of the impact of his work, his research still takes for granted the central premise—­that the best way to approach people, whether as customers or suspects, is by ignoring what they say or, more to the point, treating them not as intentionally communicative human beings, who are part of relationships and communities (including in some cases as cared for and caregivers), but as isolable subjects to be “analyzed.” This is already a problematic and individualistic approach to human interaction that critical disability scholars, among others, have criticized as a denial of social and empirical reality.45 The main criticism of the Ekman view, independent of its incorporation within systemically and episodically violent institutions like the police and military, is that it offers no opportunity for voluntary or intentional action.46 Yet for some people, intentions may be hard to discern. You might have to really know them. But those with the best chance to grasp another person’s intentions come from the network of carers and family and friends who know that person well and interact with them often. Four years after Arnaldo Rios Soto was shot at, in January 2020, a sixteen-­year-­old youth diagnosed with autism, named Eric Parsa, suffocated after he was sat upon by a Louisiana sheriff ’s deputy for nine minutes. This all began because he had a meltdown in a public place while out with his parents. Strangers called the police. In an effort to restrain him, and prevent what the responders interpreted as nothing more than violent outbursts, they killed him. Not only did the police on the scene not endeavor to see what Eric might have been trying to say, in his own way, they also did not listen to his parents, who understood him better and tried to get them to stop. Still, caregivers sometimes do need help. Unfortunately this can invite the very same violent response, fueled by a pathologically dismissive approach to engaging with suspects. That same year, Linden Cameron, a thirteen-­year-­old youth diagnosed with autism, survived after being shot fleeing from police in Salt Lake City. This time parents had called crisis intervention for help with his behavior, something they had done before but swore they never would do again.47 They needed help, but their interpretation of events was paid no heed, certainly not after whatever training the police had had kicked in. Avoiding incidents like these begins by assuming that even when they need help, caregivers still know better than armed officers supposedly trained to read the behavior of anyone at any time, to see who is a threat and who is not. Better said, caregivers’ knowledge is based on a recognition that the people they care for are capable of expressing themselves, sometimes in unexpected ways. To acknowledge caregiver “expertise” on the matter is therefore to acknowledge not their cleverness but the importance of home signs, of

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relational context, for habits of communication and mutual understanding formed over time, not necessarily immediately accessible to outsiders. This also means disempowering (and likely defunding) people armed with weapons or with prison-­like institutions who tend to engage with “suspects” as if they were not worth understanding, only controlling and possibly killing. Violence, both systemic and direct and interpersonal, is caught up in the broader discourse on “the nonverbal” as a natural signal, as unmediated truth, as direct access to the (potentially aggressive) behavior of another. While this recognition cannot fully explain violent encounters with police, it does begin to offer a hint at the context of the training and culture of policing, beyond simply saying that some or all police are racist or ableist individuals. By reading a person’s behavior (let’s call them the suspect), as full of tells, signs of duplicity and ill intent, one can quickly assess their actions, regardless of their own intentions. Like a dog with its tail showing, the “suspect” can appear to adopt an aggressive stance without formulating and expressing an ethical position on their own actions, without taking a stand. This interpretive approach to suspects can only work if they are paradoxically seen as communicative and not communicative at the same time. Such a skeptical interpretive approach is arguably commonplace in American policing and beyond, and has helped shape (and, in Jonathan Rosa’s terms, “co-­racialize”)48 encounters so that they are especially more dangerous for people when they appear or are made incapable of speaking for themselves. A person may not be able to speak because they never learned how, like Charlie, or because someone imbued with authority, who refuses to hear them, is kneeling on their neck.49 It’s now later in the summer. June resigned a few weeks ago via text, saying she was not a “good fit” for Charlie. I cringe and tighten my fists, then let out a painful sigh. June seems to be using “fit” as a more neutral-­sounding euphemism for what she sees as his continual aggressiveness toward her. Maybe we will find someone else, but it is getting harder and harder to find people now that he is older, bigger, stronger, and still so dependent, so capable of unpredictable outbursts, however rare. On what would end up being her last day, June called me home, her voice again frantic, to help with another meltdown. After he was calm, we mutually decided she should go. “He scares me,” she said in between the apologies, tears in her eyes. No more need for pleasant euphemisms. Seemingly ashamed at her words and trying to make me understand why she was abandoning her post, I could only stare at June, my face frozen in place, concealing the cascade of feelings and thoughts beginning to overwhelm me. It cut me so deeply to hear those

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words—­“he scares me”—­that you would think I hadn’t spent years imagining conversations exactly like these. “Sorry it didn’t work out,” I managed after a moment, and she was gone from our lives.

Winks and Blinks Revisited It is hard enough to find representations of cognitive disability in the ethnographic record, let alone those involving nuanced takes on violence.50 I did find at least two, though. In his ethnography The Magars of Banyan Hill, anthropologist John T. Hitchcock introduces Maila Ba, the brother of a village headman. Perhaps because Maila Ba never had children of his own, despite being married seven times, he is shown as having a close relationship with some other ­people’s children.51 This includes an episode Hitchcock describes that sounds all too familiar to me: There was a family of Ex-­slaves living just behind his cattle shed. They had two sons, and both were feeble-­minded. The elder, a boy of seventeen was devoted to Maila Ba, and when the boy flew into occasional rages, threw stones at the person he thought had crossed him, and retreated into a tree, only Maila Ba could calm him and get him to come down. During the heat of the day, they napped together on the same straw mat under one of Maila Ba’s trees.52

I love that the boy’s “rages” are given no other comment or judgment, either by Hitchcock or apparently by Maila Ba. I love to imagine the home signs only Maila Ba and the boy knew that helped calm him, and I wonder if the rages, the stones thrown, the tree climbed, were part of that nonverbal dialogue as well. There is a similar scenario mentioned by Aaron Jackson in his more recent ethnography, taking place in the contemporary United States. Near the end of the book, he explains that one father, Doug, knows how to calm the “violent outbursts” of his disabled son, Nick: “In each instance, Doug very expertly calmed him down, leaning his forehead against Nick’s and gently talking to him.”53 Perhaps Nick in this situation is also trying to use what appears as “violence” as a sign to follow, and Doug knows how. Nick ultimately came under his father’s primary care because of this ability to translate outbursts into closeness. Having words with which to frame such events does not do away with uncertainty. With verbal expression, there is also always open-­endedness about whether the way someone says something was done on purpose. A slip of the tongue, a misused word, an accidental mistake in grammar, a

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poorly told story . . . all of these things happen all the time and challenge the divide between sense and nonsense. Maybe Hutchinson or Jackson got the details wrong in their ethnographies, or maybe I am misinterpreting their writing. At the same time, the uncertainty that comes with some nonverbal actions can be distinctly different. Home signs present this problem more often because they are not as established, not as clearly and intensively imbued with meaning. Jeanne and I and Charlie’s carers are constantly asking ourselves whether his gestures, vocalizations, bodily movements, and facial tics are intentionally expressive, meaning whether they are meant to be shared with others who will interpret them in turn and react accordingly.54 These tensions around interpretability need not be connected in any clear way with violence. To give one example, it sometimes happens that Jeanne and I are in one room reading or watching television, and Charlie is in another. Suddenly we hear him utter (speak?) sounds that we hear as “Maaaahm!” or “Daaaahd!” But we are painfully aware that the noises he made may or may not have been those sounds and, even if they were, may or may not have been intentionally produced for us, to summon us to him. Charlie is free from the mighty pen, from the forceful insistence with which symbols become fixed to people and things, the power to say this is this and that is that.55 We always run to him when we hear our respective “names,” just in case that is what they are. His response is either to send us away or keep us there, neither of which necessarily confirms what it was he was saying or whether anything was being “said” at all. This is all complicated by the fact that we want, very very badly, for him to say these words. I wake up with a smile on my face. I just dreamed that Charlie could talk, and not for the first time. He said he loved me. In the dream I was so excited. I couldn’t wait to tell Jeanne that he was really talking, and what he decided to say. But I was also hoping, in the dream, that she would not be hurt by the fact that he hadn’t said it to her . . . yet. When I dwell on these images and thoughts, upon waking, I have a choice: I can enjoy the false memory, how good it felt, how exhilarating. Or I can indulge my depressive side and wallow in self-­pity that this has not, may not, may never happen. I do a bit of both, and eventually it has left my mind entirely.

The challenge here goes beyond the distinction between the assortment of signifying vehicles in semiotic theory (for example, into index, icon, and symbol) and begins to veer into the more basic distinction between mere behavior and meaningful social action, blinks and winks.

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Open to Silence Here I return to the auto-­ethnographic example with which I began, about Charlie’s pinching and Jeanne’s recognition that it could be (or always already was) a sign. The account I presented is not only an episode about seemingly overcoming a disability-­related difficulty, but one that begins with an ambiguously aggressive/expressive act. Focusing on people diagnosed with severe intellectual and/or linguistic disabilities, in particular, this resembles the sort of potentially dehumanizing representation that has been used to oppress them further by rendering them inhumanly “dangerous.” As explained, the threat of violence against people like Charlie—­ whether through institutionalized brutality at the hands of medical orderlies and police, or in inevitably imbalanced care situations of any kind, including his home—­is in part underwritten by their perceived differences. And yet, I began with this fraught, auto-­ethnographic description precisely because it brings the problem of violence front and center, including the key problem of who gets to define what counts as violence and how, that is, who can take an acknowledged stance on violence. The fact is that Charlie can get as aggressive as he wants, but he will still likely always struggle to define the situations he finds himself in as much as those who can talk. If he has a communicative stance, it cannot be presented to others, legitimated and circulated in the same way. Discourse creates “violence” figuratively and, therefore, literally.56 In Charlie’s case, his pinching behavior was violent when my wife and I said so, only for us to “discover” it to be something else. Indeed, from our perspective, Jeanne’s and mine, this story is not about overcoming his impairment, per se, or about reestablishing normative frames of conduct. Instead, the way we see it, Jeanne figured out that we were the limited ones, we were being unimaginative and ungenerous in our interpretations of his behavior, and our normative take on the situation (that he is ­misbehaving and should stop) was the very obstacle to overcome. In our minds, choosing to interpret what appeared to be “aggression” as a call to imitate (“do what I am doing . . . to me”) was tantamount to refusing the equally ableist narrative of our son’s incommunicable nature and inevitable decline into institutional care as a result of intensifying aggression (a popular fantasy to fuel my predictable wan chum anxiety). It was not violence after all or, put differently, it was not only violence for its own sake, but violence in service of instruction, of relating to one another better. Even so, that interpretive pivot by us, the larger story of a change in how we define Charlie’s behavior, was made possible through talk.

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But the ends and means of home signing are not always so clear. “Jeanne is the one who figured it out,” I wrote at the start of this chapter. But that makes Charlie’s behavior seem like a puzzle or equation, with a right and wrong answer, a linear trajectory from problem to solution. Is it so clear what are the means and what the ends in interactions like this? I called it “gesture,” but what is a gesture if not an intentional communicative act? Are we sure that is what Charlie was doing, that his pinching was not an amoral attack but an ethical request? Maybe, for example, there was no invitation but a totally unrelated set of distinct events—­he was pinching, then we did—­and this was not causal or mimetic, but utterly random. He does pinch us still, if even more rarely, in what seem only to be aggressive meltdowns. At least . . . that is how we see them, how we define them now. This tension is what this chapter has been about, a tension that is central to the assumed divide about what is meaningful communication and what is not, which overlaps with further divides over whether something is intentional or unintentional, human or animal, moral or amoral, among many others. Many aspects of life are semiotically undecidable in this way, and most of us lingual types just ignore that or sweep it under the rug of endless talk. And yet the porous boundaries between styles of communication are also tied to structural violence. As I have argued, over the course of the twentieth century, some of this knowledge production has helped support the institutionalization of abuse in American life, perpetuating semiotic chains of force around the perceived threat of suspect behavior. All these cases involve people who are thought incapable of producing intentional communication or whose words were deemed as untrustworthy to begin with. One successful response to such ableist and racist projects is to reassert the capacity for voice on the part of those robbed of it. This is one of the reasons that in the Black Lives Matter protests of recent years, people adorned signs and clothing with representations of ignored and denied speech: “Don’t shoot” or “I can’t breathe.” In a very different move, Seshadri-­Crooks explores the power of silence. In her book she devotes attention to mute and anomalous speakers, such as historical examples of “wolf children” adopted after being left without human contact.57 Silence can be doubly troublesome, as she points out. On the one hand, it is hard to discern whether there is meaning, intention behind silence in the first place. Someone may be refusing to speak or unable to speak, silent or silenced. On the other hand, all too often those who speak and are heard are the ones whose stance matters in the end, who get to frame the situation as violent or nonviolent: the police with guns aimed at Arnaldo Rios Soto or Linden Cameron, not Arnaldo or Linden; the police restraining and suffocating Eric Parsa, not Eric. One could add,

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taking into account the pinch with which I started, Charlie Reno’s caregivers and educators, not Charlie. Though these contexts are obviously very different, the politics involved in naming behavior as “aggressive” or not, especially after the fact, after guns have been drawn and shots fired, is present in caregiving situations just as it is contemporary policing. Being open to home signs means recognizing the richness of silence, the nuances of an individual’s or a small group’s shared nonverbal expression. By extension, this means rethinking how we approach subjectivity, as Matthew Wolf-­Meyer contends. This entails embracing a “semiotics of the present,” by which he means one “that depends on the immediate situation rather than history and the institutional regimentation of signs. Making the symbolic modular in this way renders it supple in its interpretation and manipulation; it renders it transversal and more open for interpretation.”58 To reach this end, moving beyond imitation and recognition is vital. The simple fact is that working with home signs means acting at the limits of language, of our ability to securely know for sure how to categorize, and therefore how to react to, other people’s actions. It means guessing and hoping you guess right. But some of the people doing guesswork have all the power and some have little to none. A lot can be riding on how we choose to interpret a pinch.

[ C h a pt er T wo ]

A Ticklish Subject

“Tickle” may be the only word Charlie says. That is hardly surprising, since it is also one of his favorite activities, at home with us at least. Using home signs, Charlie asks me to tickle him just about every day, and it is, without question, one of the primary things that he seems to think he needs other people around for. If Charlie were tasked with inventing sociology or anthropology from scratch, I think he would quickly dispense with class struggle, power relations, gift exchanges, family descent, unconscious sexual drives, or violent sacrifice. He would focus squarely on tickling. In this chapter I aim to make the communicative side of touch more apparent by examining tickling.1 This is not only extremely important to Charlie in our day-­to-­day lives, but a strangely underexplored yet near universal form of improvisational communicative contact. While “tickling” can have more than one meaning, as we will see, for Charlie it is about engaging in or threatening direct contact with another’s body. Contact—­the sensation, perception, and interpretation of touch—­is closely intertwined with any form of communication, but especially the nonverbal kind. This is otherwise known as “haptics” and has received increased attention in the literature on affect, perception, and feeling in recent years.2 Some common expressions in English allude to this relationship, where being “in contact” or “in touch” with someone stands in for communication as a whole.3 But simply being in physical contact is not enough to allow for mutual understanding to occur, nor is it always necessary. Thanks to the extensive powers of writing systems and telecommunication devices, messages can transmit over vast distances of space and time, greatly reducing the amount of physical co-­presence necessary to convey information.4 Contact can also take on more troubling connotations. In colonial situations, the idea of “contact” does not suggest opportunities for successful communication; rather, it calls up the asymmetrical power relations associated with cross-­cultural encounter, conflict, and conversion. The “contact zones” that result, as Mary Louise Pratt refers to them, involve imbalanced 57

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and harmful ways of interpreting signs, the semiotic scaffolding for systems of material oppression.5 This idea of asymmetrical contact zones has recently been applied in the context of critical animal studies. Fully aware of the colonial origins of these senses of “contact,” Donna Haraway uses the notion of “training in the contact zone” to characterize sometimes fraught relationships between dog trainers and their animal companions. The very word “pet” in English can also serve as a verb describing an activity such as stroking fur, hair, or skin, which helps show just how much animal-­human relations are mediated by touch. The comparison Haraway provides between colonial and mammalial contact is fitting, in a narrow sense at least, since animal relating also involves extreme power hierarchies and practical negotiations across radical difference, where “the rich contact zones multiply with each tactile look.”6 Seen in this way, postcolonial and animal studies perspectives share a concern with the interpretive stakes of semiotic encounters. This is where home signs potentially come in. Haraway might as well be talking about relating to Charlie when she writes that “touch, regard, looking back, becoming with—­all these make us responsible in unpredictable ways for which worlds take shape. In touch and regard, partners willy nilly are in the miscegenous mud that infuses our bodies with all that brought that contact into being. Touch and regard have consequences.”7 These words gesture toward a radical commitment to empirical messiness, to interest in zones of real, fleshy, tooth-­and-­nail contact.8 Some of the caregivers I came to know would likely agree. Some talked about their relationships with dogs, horses, or other animals as preparing them for inventive sign work with people diagnosed with cognitive and other disabilities. They were clear on not drawing a moral equivalence between animals and people, only noting similarities in forms of contact. It is worth considering communication across species to complicate what we think about those who do not speak, and to challenge assumptions about what it means to be human or not. Many people compare nonhumans to humans on the basis of communication, not to humanize or dehumanize either side, but to empathize with both.9 Debbie, whom I briefly introduced in chapter 1, was most explicit about this. Before her son’s diagnosis with autism changed her career trajectory, Debbie’s first love was working with horses at a local dairy farm in upstate New York. Eventually she ran what she called a retirement farm for horses; wealthy folks would donate the animals when they didn’t want them anymore rather than have them put down. Like a growing number of people around the world, Debbie became interested in the benefits of therapeutic riding for people with different disabilities. More than that, though, Debbie credits years of working with animals for

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her “acute observation skills” and ability to understand and relate to people who communicate differently. One of the keys to horse-­human contact zones is touch—­that is how a prospective rider communicates to a horse that they are worthy of the animal’s trust.10 Trust in these instances is not an abstract notion. It is something horse and human both feel and only through mutual contact. Touching and being touched by an other “escalates the balance of intimacy,” Asta Cekaite and Lorenza Mondada write at the start of their recent volume on the subject.11 This is true, for instance, with animals in cases where “­haptic petting touch” can function not only to reward in an instrumental way, but also to “upgrade” the encounter “by intensifying their action, with a greater corporeal commitment.”12 And yet, for this same reason, the interpersonal or reciprocal dimension of touch can also be “invisible” from the perspective of anyone outside the haptic encounter.13 Someone can watch me tickle Charlie, but that does not make them feel the way we do. In this chapter, I also review some ways of thinking about tickling, which, like all touch, is sometimes thought to be natural or primordial. For this reason, I argue, some scholars miss the socially compelling and semiotically layered dimensions of tickling. I conclude with a discussion about how we might think differently about both touch and communication, as a queer form of contact. Tickling in this sense is not only a source of some of our most familiar and treasured feelings—­as kin and companions, for instance—­but also can be a challenging, even unsettling way of feeling with others.14 What Haraway calls “becoming with” is part of my inspiration here, and I argue that this is what vaults many tickling episodes into creative and meaningful semiotic encounters, whether or not words are exchanged. Tickling is interesting because it is a near perfect example of social touch, as established in the psychological studies of G. Stanley Hall at the beginning of the twentieth century. Hall thought certain kinds of tickling (Charlie’s favorite kind) could be characterized by their complete dependency on others. Without another person this kind of touch cannot exist as such—­we quite literally need other people in order to feel that bodily sensation. It is therefore one of the most clearly and immanently social of the kinds of touch people are capable of. What can this tell us about the improvisation, idiosyncrasy, and import of home signs? These dimensions come to the fore when one considers in more detail the drama of tickling, the way our bodies twist and shift at the thought of it, in anticipation and dread of a tickler’s fingers extended, their arms darting in unexpected directions in a mad grab at one’s body. When this actually happens, at times tickling can even overpower language—­it is as if we are unable to speak through the laughter and cries, or to speak any

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other way. In truth, in a full-­blown tickling episode, any sign use is likely going to be recruited in the freighted and fleshly encounter between self and other (including perhaps self as other, that is, self as object of a tickler’s manipulation). Put differently, if there is an idealist tendency, in language talk and scholarship, to see words as abstract forms separate from their use, then the semiotics of tickling is a helpful reminder. It brings up the materiality of communication, and hence the possibilities and playfulness involved, insofar as it takes place between flesh-­and-­blood people.15

Iggle In some ways, Charlie could not have chosen a stranger word to (sort of ) say. In English “tickle,” like the related word “sense,” can mean both a physical sensation (“I have a tickle in my throat,” “hey, that tickles!”) and an action someone performs (“when I tickled the baby, it laughed”). Already this suggests that tickling is not only a unique physical experience, but something one person does to another or has done to them by another, making it a specifically social form of affective touch. Cross-­cultural examples of tickling are fairly rare, but tend to reinforce this general assessment of tickling as immanently social, so much so that it bridges relationships between dissimilar or disconnected beings (not unlike grooming horses or petting dogs). It is worth noting that most of the evidence for this comes from studies done half a century ago or more, demonstrating that tickling remains rather unexamined in anthropology, as in many other fields. It is generally agreed, across the world and throughout history, that social elites and strangers should not be tickled, for instance. At one time, any adult man—­ but no one else—­among the Sámi in Finland felt entitled to surprise young boys and women by tickling them from behind.16 Amitav Ghosh describes a tickling incident among Egyptian fellahin where two young girls chased around a smaller, neighbor boy and punished him with tickling until he gave them fodder from his family farm—­he did not even realize their goal was to steal because they disguised it with playful yet powerful touch.17 In my own household, growing up, we could be tickled as children, or tickle one another, but we could never tickle complete strangers, parents, or elders. Added to that, it was accepted that a person (including a child) could exert some control over the situation by claiming to be unaffected by it (“I am not ticklish!”), to be too affected by it (“stop, I am going to pee!”) or simply to express dislike for it. Jeanne, for example, has always been in the latter camp. I would never dare tickle my wife. She goes so far as to say that she does not know how to tickle others—­though it may be that she hates the sensation so

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much, she just can’t bring herself to do it to others, that it would cause her to feel too much sympathy in the process. I tend to believe that, as she is a very soulful person. But even people who hate tickling, like Jeanne, or claim to be “not ticklish” needed other people to help them realize that fact about themselves. They would have to have learned this through the unaffecting or unwanted touch of another’s hands at some point in their lives. As Aaron Jackson says of “interaffective” touch between carers and children diagnosed with disabilities, the “capacity for resonance does not presuppose harmony; on the contrary, touch can be experienced as transgressive or alienating.”18 To his point, in other ethnographic examples, tickling is a way of breaking down metaphysical or cosmic barriers, of demonstrating power, of harming others (even for all eternity). One example comes from the Kali’na of Guyana, dubbed in the contact zone “Caribs” by Columbus, a label he chose for groups especially resistant to colonial violence. There are reports that Kali’na once believed tickling was one of the primary means by which the dead could pester the living: “if a living person unwittingly does something to displease a ghost, the latter will persecute him, even pursuing him to his new dwelling. Living persons often complain that ghosts are tickling them, pinching them, or causing other uncomfortable sensations.”19 Such “ghostly pinching” by the dead was documented more recently, farther north, in Chihuahua, Mexico, among Rarámuri.20 For people of the Malekula island of Vanuatu in the South Pacific, moreover, dead people are not immune to tickling, since one view of hell was as a place of constant tickling: “A ‘bad’ man is said to go underground, where beings . . . dance about him, prodding his sides and belly with their fingers, so that he writhes continually with the tickling.” On the nearby Marquesas Islands, a century ago people were said to suffer from a madness that led them to tickle people under the armpits and then eat them.21 While stories of cannibalism are all too frequently imagined or exaggerated in reports about colonized people,22 the role of tickling in mediating between afflicted people, the dead, and/or other-­than-­human beings appears somewhat common, including miniature humanoid beings with tusks among Tiwi,23 the powerful, shit-­eating deity whom the Surinamese Ndyuka dubbed “the tickler,”24 and Ingalik shamans and Tlingit prophets, recruiting spirits or reanimating the dead, respectively, by tickling them.25 Given the corporeal drama of tickling, it seems to highlight the prominent tensions and questions that circle around contact and social distance. I will argue that tickling is not only to some degree rule-­bound, but at the same time could be seen as a compelling form of improvised and idiosyncratic bodily communication, a home sign. Typically, only people you are close to will ever have occasion to comment on your tickling technique

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or the relative intensity of your ticklishness. In smaller subgroups people develop their own mode of tickling (or aversion to it). Jeanne, Charlie, and I certainly have done so. Not only does tickling lack formal instruction or enforcement, as an ostensibly unserious game of cross-­body play, it is also something you have to give yourself over to in order for it to be fun. For tickling to work, it has to be a bit uncertain where hands will go next (legs, belly, armpits . . .) or when or if they will ever stop. There is a sense of barely controlled danger at work in tickling, of minor jeopardy. This makes it different from the kinds of affective touch that are most often discussed in reviews of caregiving situations, such as hugs or massage. Like these other forms of touch, tickling can be important in settings where physical contact is a means of sending nonverbal messages that build trust and understanding. I said at the start that “tickle” is the only word Charlie says. It is actually more like “iggle,” and it is unclear whether Charlie is saying a word when he says it. For speakers of English, “tickle” is generally taken to be a linguistic symbol. This means that they can use grammatical rules to arrange “tickle” alongside other words and say or understand sentences like, “I am not ticklish” or “tickle is a verb” or “I haven’t been tickled since I was a child.” Importantly, they can do so even if no one is being tickled around them. Maybe Charlie is only reacting vocally to stimuli from the specific situation when “iggle” comes out. For instance, it could be that when I am close by, when we are both laughing and smiling, when my hands are in position above him, all of these bodily details add up to “iggle” for him. It would depend on that direct contact (close proximity) and contrast (hands raised above him rather than at my sides; faces smiling rather than serious). Technically “iggle” would not be a symbol for him, in this interpretation, but an index or indexical icon. When speech and language teachers or ape researchers try to determine whether a symbol is being used as a linguistically competent human would use it, they need to make sure that it is used across multiple situations.26 What makes most (but not all) words symbolic tokens is that they pry representation loose from complete reliance on making direct contrast and contact. “Iggle” may be an arbitrary symbol for Charlie; it may be a purely ­contact-­/contrast-­based home sign. Walter Ong points out that spoken words are sounds first, which come from contact: “Sound itself is related to present actuality rather than to past and future. It must emanate from a source here and now discernibly active, with the result that involvement with sound is involvement with the present, with here-­and-­now existence and activity.”27 Maybe that is the most important thing about “iggle” for Charlie—­not what abstract idea it refers to, but that it is being said right then and there.28

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That interpretation might fit best because Charlie is quite adept at manipulating his voice to make sounds that are not words. This is part of what Sicoli calls his “voice register.”29 While most linguists associate phonation with stylistics, Sicoli argues that nonreferential acoustic shifts are performed to point to distinct speech registers in Lachixío Zapotec. This gives those shifts in sound a more pronounced role in social performance. Without the use of what Sicoli terms “lexical registers” (which depends on using words), Charlie employs alterations in voice to help define the parameters of his interactions with other participants and objects. He has used a low, creaky voice, for example, to call for more bodily contact and “deep pressure” sensory stimulation, while a tonal, breathy voice typically indicates that he would rather focus on manipulating an external object with his hands. In these cases, Charlie’s vocal shifts help those around him to discern the best way to interact with him at that moment. Unlike his gestural communication, phonation helps him express his sensorimotor needs. They are not necessarily meant for us to hear, in other words, but might still help organize his own thought and action in the world. Clearly, “iggle” is involved in some of the closest encounters Charlie has with people he has the closest relationships with. Not just a home sign, “iggle” for us is part of what could be called a home dialogue. Like sentences or hugs, tickling with Charlie is also a sequentially arranged act, not random or haphazard, and has a relatively structured beginning, middle, and end.30 Since we do not have many words to fall back on (and hence no metalanguage) organizing our interaction is a feat we accomplish together using improvised home signs including but not limited to “iggle.” To start a tickle session, Charlie will normally escort me somewhere we can sit down next to each other, the couch or his bed. He does this by grabbing my shoulder and gently pressing me in the direction he wants to go (contact), or taking my hand, or sometimes heading to the destination and then striking the surface of the furniture louder than he would normally so I know to come to him (contrast). I know tickling is on his mind because he is usually already smiling while doing this, as if grabbing and leading me along is already a risky proposition, one that could lead to my tickling him in response. When we are going to begin, he will sometimes say “iggle iggle iggle” or place my hand on his ticklish spots (neck, upper leg, belly, chest, armpits). He does this in a hesitant way, watching me carefully and cracking a grin, like he can barely contain his excitement. When I start grabbing at his flesh here and there, saying “tickle tickle” in a high-­pitched tone, he laughs hysterically. I do not tickle nonstop, but retract my hands and smile, as he giggles waiting in anticipation, then go at him again for a few more beats before taking another short break while he maneuvers away from me

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(but not too far) . . . We do that for some time before he gets serious and sends me away or asks for something else, but the opening sequence, the way the interaction is divided up, is normally the same each time. Despite the challenge of properly classifying the word-­like qualities of “iggle,” it acts like a clear instance of pragmatics, or intentional social communication. When I hear Charlie say “iggle” or other varieties of it (a rapid-­fire “iggle-­iggle-­iggle” or “gull-­gull-­gull”), I understand that he probably wants to be tickled or tickled more. Crucially, he seems to know that I know that. At the same time, in tickling the physical interaction is so primary that any use of words (mine or his) is a bit beside the point. It can even get in the way. While I have often tried to coax Charlie to repeat “iggle” to get me to do it, therefore habilitating him into possible language use, he sometimes resists. This is not only because of his tendency to communicate nonverbally; also, arguably, he resists making this a language-­learning exercise because it spoils the central conceit, the drama of tickling—­he is resisting and I am initiating, he is affected and I am affecting. However lingual this utterance, “iggle” primarily serves to decorate or “laminate” our intercorporeal contact, as can be the case with the words spoken around acts of hugging for instance.31 Beyond anthropology, the literature on tickling, sparse though it is, reflects few if any of these issues, its social and political quality, or the fact that we learn by interacting with others that we have a certain kind of body. Outside of anthropology, evolutionary psychologists have tended to understand the intensity of ticklish contact as a form of virtual violence, one that entrains us to endure harm and resist attack. Like ordinary people all over the world, they find tickling to be productively transgressive and alienating. But, crucially, it serves this purpose in part because other people—­the ticklers, their hands, their choices—­are involved in making the tickled feel things in their body, feelings otherwise inaccessible to them. I draw on this research in what follows, but I am also interested in the relative neglect of tickling in discussions of haptics, let alone in sensory studies, phenomenology, and semiotics generally. What makes tickling seem unserious in the first place, I argue, is also what makes it troubling as a form of touch. And this cuts to the heart of the promise and impossibility of the ideology of self-­contained personhood in modern life, which, as scholars of disability have pointed out, often creates tension around impairment and seemingly exceptional situations of dependency.32 While this is presented in many different ways, one prominent ideology of the modern self relies on distantism, or separation from being affected or moved through the captivating allure of proximity. In this way of thinking, “reasonable” judgments and choices are best made at a distance

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from one’s own and other people’s bodies. What might be called the queerness of tickling is its unexpected intensity, its affective reassertion of the power asymmetries involved in epidermal contact zones.

Gargaletic Ontogeny Within psychology more broadly, as far as I know, tickling has not been discussed in relation to cognitive disability. It has received more sustained attention and has also maintained a connection, albeit very different from the ethnographic literature, with the possibility of death and an interest in tickling nonhuman beings (though animals rather than deities and ghosts). Specifically, tickling has been taken to be an inadvertent or reflexive reaction, like yawning or blushing, as well as an inherited instinct or “fixed action pattern.” Rather than a purely positive affect, one associated with play, joy, and humor, evolutionary psychologists and sociobiologists have suggested that learning to tickle and resist tickling through force (rather than releasing laughter or having fun) is the ultimate adaptive value it confers. In such evolutionary accounts the origins of tickling may be no different from those of a pre-­individual or sub-­subjective affect like rage.33 Indeed, being enraged and frantically resisting another person’s attempts to tickle you would be nearly identical, and have broadly similar adaptive value for the organism in question.34 The important thing about tickling and being tickled, for these scholars, would seem to be that they serve to provide early training for human infants and children in combat and defense, which, unbeknownst to the organism, will later embolden progeny against future competitors and predators.35 Lending support to these theories of tickling (beyond rather rigid adherence to Darwinian selectionist thinking) are examples of ticklishness in nonhuman beings, especially other mammals, such as rats and chimpanzees. While words are normally not available to question the subjects, something like tickling seems observable: someone—­a lab researcher for instance—­grabs at a rat’s flesh in just the right spot and paroxysmal convulsions and vocalizations ensue. It can be hard to tell whether the rat likes this; there may be rats that hate tickling and rats that love it, after all. When signing is possible, pleasure is easier to assess. Washoe the chimpanzee, supposedly the first nonhuman ape to be taught some sign language, became invested in signing early on in order to get tickled more. Washoe’s first signs were taught through gradual shaping and immediate reward, typical operant procedures. When Washoe approximated the sign for “more” (both hands placed together in front of the body or, in the infant version,

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overhead), she was rewarded with more tickling or more rides across the floor in a laundry basket.36 While these examples (nonhuman tickle experiences) could be taken to suggest that other beings are more like us (that they also play, enjoy pleasure), the opposite conclusion is more often drawn: that this similarity means humans are more animalistic, that is, mean and selfish, and desperate to survive. In evolutionary psychology tickling is still immanently social: it is something you only experience if someone else does it to you. But this social dimension is most often reduced to the zero-­sum game of survival through competition, possibly to the death. This certainly would justify evolutionary selection for a behavioral pattern, but in jumping immediately to ultimate causes for a behavior, this way of thinking misses something even more basic about tickling as felt and performed. A century ago, the most influential observers of human growth and development had no choice but to take tickling seriously. Charles Darwin and Sigmund Freud both formulated accounts of tickling behavior in order to speculate on humanity as a whole.37 As far as I am aware, however, the first person to acknowledge the dual nature of tickling (as experience/ action like “sense”) was turn-­of-­the-­century psychologist G. Stanley Hall, a student of William James. Though he is better known today for developing psychology as a modern discipline in the United States, Hall also wrote the influential book On Adolescence in 1904. As a child he had been expected to become a minister, and even as the country’s most famous psychologist he maintained a lifelong fascination with otherworldly communication with the beyond. He even brought a clipping of a story on the popular American spirit medium, Leonora Piper, to a meeting he arranged in 1909 in Worcester, Massachusetts, between Sigmund Freud, Carl Jung, and William James.38 In fact, James’s radical empiricist project was partly shaped by the loss of his infant child, Herman James. In Ghost Hunters, journalist Deborah Blum describes the still nonverbal Herman as “a child so irresistibly chubby and cheerful that he’d immediately needed a less serious name. James nicknamed him Humster.”39 After Herman’s death from whooping cough, James followed his wife’s advice and grudgingly met with Piper, who claimed to be in contact with the beyond and convinced many skeptics in her day, James included. Radical empiricism indeed. Meeting and testing Piper had a considerable impact on James, most obviously his notable openness to metaphysical explanations and phenomena, as seen in his later books. But it all started because, in James’s grief, he hoped to remain in some form of contact with his nonverbal, chubby, and cheerful child, no matter the apparent gulf that separated them. I can relate to that.

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Yet, to James’s chagrin, Hall spent years of his life debunking people he thought were charlatans pretending they could speak with the otherwise quiet dead. However, after Hall’s wife died, he, like James, reportedly sought out a message from the afterlife, which he kept in his private collection for years. Even less well known than these details about Hall’s life is the fact that he also conducted research on tickling, though for his part he did not associate this, as Mexican Rarámuri have, for instance, with communication with the dead (at least not in print). Instead, Hall was interested in making distinctions and providing definitions to put research on tickling on more solid scientific footing. This is not unlike his rejection of his former teacher’s more introspective take on psychology in favor of more experimental studies (recall James’s other student, Walter Cannon, in his work on flight or fight, discussed in chapter 1). To this end, Hall separated the activity/experience into two forms, depending on the sensation involved and, crucially, whether or not it relied upon social interaction. The first form, light tickling, Hall termed knismesis, which is defined by a less intense tickling sensation like the one a person can get when a feather or finger gently caresses their skin. This he thought was very different from the kind of tickling typically involved in childhood play, which Hall termed gargalesis. Knismesis is an experience that a person can do to themselves, but gargalesis is not. Try as we might to tickle ourselves, we are not likely to generate convulsive laughter, let alone beg ourselves to stop. Psychologist Christine Harris and her colleagues have done more than most to examine this dimension of gargaletic tickling. While other psychologists have tended to emphasize the phylogeny of tickling—­its ultimate origins, its having been selected for evolution—­Harris is also interested in what we might term its ontogeny, meaning how the development of tickling occurs in practice. I am less interested for my purposes in how some of the results of these studies were interpreted, per se. What they also show is how tickling is involved in broader problems of the mind and the self than is normally acknowledged. One example of an experiment by Harris and colleagues is a “tickle machine” they created to see if subjects would laugh as a result of gargaletic stimulation if an automaton was creating the sensation and not another person.40 The result was the same; it did not seem that having another actual person mattered. Of course, it might have mattered that the subjects knew that the machine had been designed by people with the intention to tickle them, and it might have mattered that they knew, at the very least, that they were on some level not “themselves” choosing to be tickled, whether or not they had a clear picture of an “other” who was making this choice for them. To be fair, this is partly about the limits of what you can test experimentally as a psychologist. Regardless of how we

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interpret these studies, at root in them is the question, not of the origin of tickling only, but of its relationship to questions of reflexive awareness and self-­identity. Evolved fixed-­action pattern or not, what we feel through intense touch provides some of the best examples in support of the Spinozist and Deleuzian case for affect, like the one that sociologist Mark Paterson offers, “underlining the suitability of their term for conceptualizing relations between individual bodies and larger energetic frameworks.”41 This is so because there is something pre-­individual about the intensities of what we feel, something in you that is not quite you when you “assent” to a game of being tickled. Tickling superficially appears to be about a struggle between at least two people, one tickling and the other being tickled—­and this is what allows for its translation into frameworks that emphasize Darwinian selection and competition. If instead we take inspiration from the likes of Gabriel Tarde, we might consider that external oppositions “are rendered possible” as a result of internal oppositions.42 In other words, a tickled self is a self divided. Seen in this light, tickling would involve generating and mediating tensions in a number of registers, including at minimum the following: A. External opposition between a self that has to deal with these oppositions and an other who does not and yet who can amplify them by tickling (Charlie needs someone else to be The Tickler for the experience) B. Internal opposition between a mind with intentions and a body with affective reactions (Charlie wants to be tickled, but resists it when it is happening) C. Dialogical relation (blending internal and external oppositions) between an “I” that has intentions as a subject and a “me” that exists for others as an object to be tickled (The Tickler helps Charlie feel this divide between what he wants and what his body resists) D. Dialectical relation (synthesizing all three) that is akin to studies of language and subjectivity, beginning with the recognition that a dialogical other is also a “me” and an “I,” leading to a tension that finds possible resolution when the tickler is tickled (Charlie can make The Tickler tickle or make them stop tickling) What makes it pleasurable for some people to be tickled and to tickle is the excessive and immediate automatic response it generates (B), not only intense laughter but literal paroxysms, but they only get this through another person’s touch, as if the latter delivers an electric shock to the entire system—­a system that is intensely you and not you at the same time (A).

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“Agreeing” to be tickled is profoundly strange. It is giving permission to someone to try and violate your personal space in a way that dramatically demonstrates just how unbearable this can be (C). Yet there are rules of some kind at play here, intentions, even for Charlie. Those rules delimit what is too much or too little tickling, for that person, for that specific part of their body (foot, belly, leg, armpit . . .). They help people understand over time a personal roadmap to unpleasant pleasure. They know what their ticklish self is like, so they can say things like “I am not ticklish” or “I am really ticklish here” or “I hate being tickled there.” They can continue to do so later in life, even if it has been decades since anyone has tried. But this tells us that they must have had some kind of dialogical connection to someone who once tickled them, even if they no longer remember who that other person was. I certainly don’t. I have tried and cannot remember the face of the person who tickled me first or last. When I was around Charlie’s age, the best-­ selling toy in the United States was a “Tickle Me Elmo,” a doll seemingly entirely premised on gargaletic play. Whether in human or toy form, tickling as a social interaction becomes embodied, more specifically, associated with the type of body one says that one has. Many Americans I have known gradually learn to characterize themselves as a whole or specific parts of their bodies as ticklish, not ticklish, or very ticklish. For some, it is only with adulthood that they become someone tickling and never or rarely tickled. This all suggests the fourth register—­after having been tickled, or becoming a tickler, that can mean recognizing that another body is like yours, is internally and externally divided (D). In a book about her nonverbal son, John Henry, Allison Moorer puts this beautifully: I grab his foot and tickle it. He jerks it back. He playfully sticks it back out and toward my hand. I grab it and tickle it again. He laughs. Communication. We are playing. His foot is ticklish like mine. His foot is like mine. He is like me. We are related. I know his foot. Common ground. I know him.43

Moorer’s sense of connection comes from an intense form of touch, which she regards as communication. One of the subjects of Aaron Jackson’s ethnographic research on caregivers for disabled children says something similar: “It’s very easy for me to see things through her eyes,” says Paul, the father and sole carer for Pearl, who is diagnosed with both cognitive and physical disabilities. The first interactive thing he mentions to account for his sharing her point of view? Tickling. “We would both be watching TV,

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or I’d tickle her, just sitting around physically, that’s how we would relax in the evening.”44 I have many of the same thoughts as Moorer and Paul about tickling. As Danilyn Rutherford writes, experiences like these, in “proximity to ­disability,” can be opportunities for carers to “learn to be with [those they care for] in ways that are beautiful, strange, and new.”45 But John Henry, Pearl, and Charlie surely learn through these experiences too, both about tickling and through being tickled. Otherwise, if Hall was right, tickling would not work. This would be the case whether or not any or all four of the moments of gargaletic tickling that I distilled occur for everyone everywhere (it is unclear to what extent Charlie can or will tickle us, for instance), or whether more moments could be identified in the drama as it unfolds (including, perhaps, for some people, between the living and the dead). The sketchy four-­part breakdown I have offered shows only, at minimum, that this kind of touch can dramatize the difference between self and other (and self as other) in interesting and unexplored ways. Moreover, it does this in the absence of, or in parallel to, formal language. In the process, words that are more clearly lingual than “iggle” may be recruited to laminate the encounter, but that is not all one can say about them.46 Tickling is a nonserious activity worth taking seriously, in part, because it challenges a common stereotype about people with an Autism Spectrum Disorder (ASD) diagnosis. This has to do with the so-­called “­mindblindness” arguments, most often associated with an English psychologist, Sir Simon Baron-­Cohen.47 The basic idea is that people diagnosed with ASD tend to suffer from a “theory of mind deficit” such that they have trouble understanding that other people have intentions all their own.48 R. Peter Hobson has argued over the years both that understanding other minds is important in child development, particularly in linguistic development, and that this is something people with diagnoses of autism are unable to do or do poorly.49 Now, while there are many experimental demonstrations that this could be the case, with people like Charlie it is basically impossible to know for sure, given their lack of full, formal language. Tickling, in Hall’s form of gargaletic ontogeny, indicates that there could be knowledge of another’s intentions, since it would not function otherwise. More than a bit of sensory fun, tickling becomes the stuff of existential phenomenology, an unusually intense semiotic practice in which indeterminacy, or distance from another’s intentions, not only makes interaction a risky gamble (as in chapter 1) but also gives it an unrivaled liveliness. Because it is so widespread in cross-­generational and caregiving play situations, and because there may exist only tacit rules about its

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use, tickling becomes a powerful case study in the familiar and fantastic world of home signs.

“Soft Soft,” or The Sociality of Knismesis Skin, apart from being superficially transformed and aesthetically adorned, remains a surface until folded and refolded. Then, becoming fleshy, it accrues depth. Mark Paterson50

For a century, psychologists have made the case that gargaletic tickling is inevitably, intensely intercorporeal (if not interpersonal)—­we just can’t seem to tickle ourselves that way, no matter how hard we try. When we are tickled gargaletically, for those of us who feel we have a “ticklish” body, as I do, it is as if our skin stops being a mere covering or barrier. Instead it is a layer folded in such a way that the tickler exposes hidden, epidermal depths concealed just underneath the surface, depths we did not know we had until a tickler revealed them. That cross-­bodily aspect may seem unique; Hall seemed to think it was. But the other kind of tickling he identified, knismesis, can also evoke the playfulness of connection and disconnection, surface and depth. If anything, knismesis is even better at revealing the fleshy power of haptic sociality since, unlike gargaletic tickling, people tend to engage in knismesis their whole lives, whether or not they raise or interact with children, or with rats and chimps in laboratories. Close friends and family routinely engage in nonromantic, nonsexual yet highly intimate forms of light touch that are neither hugging nor massage. For some subgroups, such light touch may even have a unique name, all its own, as if to say, this is ours, our invention, our means of connection. Home signs indeed. Rachael is a white woman in her early twenties. Relatively short and stout in stature, and smaller than Charlie in any case, Rachael never seemed uncomfortable or unsure around him. When she came to work with him, Rachael had not had much direct experience with nonverbal people who were not infants, though her first cousin had been diagnosed with what she described as “mild autism.” But the physical touch, the close contact, that care for our son requires never bothered her. Perhaps this is partly because Rachael already appreciated knismesis as a form of social touch. Her family even had a specific name for it: “soft soft.” Rachael learned the joys of knismetic contact from a young age.

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One thing, and this is very weird I know, but one thing I love is, is, I call it “soft soft” and it’s something that I’ve always . . . [mimes a soft knismetic caress on her arm] . . . just the feeling of people doing that. I’ll have my boyfriend do it if we’re sitting on the couch or something . . . My aunt, she lives in Georgia, and she likes that too. So like when she’d come . . . here she would do it when we’re sitting on the couch and she’s talking to my mom.

Rachael also connected this with the kind of touch that she does for Charlie. Gargaletic tickling is not part of how Rachael interacts with Charlie, though it has been and continues to be for other caregivers he has had. “I don’t get that vibe [when she and Charlie are together],” she told me. Perhaps Charlie senses that she would not like gargaletic tickling. But knismesis is something that she employs with him, that he requests and directs. And it is part of her life more broadly. Rachael admits that she may favor this form of contact (as opposed to gargalesis) because of past interactions with her cousin diagnosed on the spectrum: The other thing, and I didn’t think of mentioning this, is my cousin, the one who does have autism, her mom would do it to her, like when I would stay over I would ask, “what is this?” This is like right at the beginning . . . and it’s like, “oh it’s soft soft” and she did it to me and I’m like “oh I love that, my mom’s done that before to me” and that was kind of a thing ever since I was younger I’ve just always loved that and that was her mom doing it to her which it might have been the type of thing like me squeezing Charlie’s arm just to calm him down. It’s kind of the same thing.

Like gargalesis, knismesis connects people through contact. And while technically Rachael could touch her own skin knismetically (she did so for my benefit in order to explain the practice), for her “soft soft” names not the sensation itself but its social uses. In keeping with this, for Rachael many of the spots that she referenced as targets for “soft soft” touching are relatively inaccessible to her, out of reach, like her feet and back. When I asked her about this, Rachael explained: I don’t know, I feel as if maybe it’s just the touch of someone else. I mean, when you’re doing it to yourself you can feel it more on your fingertips than you can on the surface you’re doing it. If that makes sense? I guess maybe it’s just the change in . . . even if I were to do it to myself with like a back scratcher or something, it would feel, it would mimic the feeling

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of someone else doing it because it’s not your hands, you’re not feeling that pressure or touch.

This adds socially haptic dimension to knismetic contact that links it more directly with gargaletic ontogeny than Hall seemed to recognize. You need others to do it well, for it to feel right, even if technically you can do it yourself. At the same time, it is interesting that while Rachael learned from a young age to see “soft soft” as normal, at some point she decided it made her family and perhaps her body different from others. “This is very weird I know” is how she first introduced it. With this, Rachael suggests that her bodily senses or interactions might be somehow unique: “I love my feet touched, whereas other people they squirm, whereas I like my foot massages or soft soft on it.” It was certainly new to her boyfriend, whom she had to train to do it correctly: “at first it was a little weird . . . ‘don’t do that too hard, it hurts, it’s not an itch, you don’t have to scratch.’” And yet, the practice only appeals to her body now because adult caregivers introduced this haptic practice to her and named it in the first place. For this reason, labeling “soft soft” as “weird,” in my reading, was not about Rachael claiming to be in some kind of touchy-­feely minority. Rather, it names an idiosyncratic form of social communication through touch, tickling as a home sign. In actuality, “soft soft” is not weird, not to me anyhow, though Rachael had no way of knowing that. Jeanne and I are not in the habit of telling caregivers, or friends or family, that for decades we have been engaging in a form of knismetic care that we call “scratching” one another’s backs. Neither of us thinks of it as sexual, though we did not do it for one another when we were only friends. Scratching is certainly intimate, our own home sign variant of what Rachael calls “soft soft.” Jeanne has even dubbed some of my older shirts “scratch shirts” because she finds lightly touching them the most pleasing to her fingertips. I am wearing one right now—­a long-­sleeved, raggedy, dark blue cotton shirt with black horizontal stripes. I’ve owned it for decades and have been wearing it on this especially warm August day in 80 degree heat in the hopes Jeanne will be enticed to scratch my back at some point. Like Rachael, I feel weird writing this down. Part of me worries that I am betraying Jeanne, somehow making what we do less special. I feel it is only fair, though, revealing some of my desire for contact, given how much I am talking about Charlie’s home signing in a similar light.

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While Rachael, Jeanne, and I have named these practices (soft soft, scratching), many people may engage in similar forms of affective touch outside of caregiving, though still with considered care. It is interesting, all the same, that this can seem somehow taboo, at least to talk openly about. Rachael does not usually mention “soft soft” to her friends, since she thinks it would be misinterpreted somehow, perhaps because any kind of contact is capable of being romanticized and sexualized, or perhaps more likely because it might seem infantile (as is indicated by the childlike repetition, or what is known as epizeuxis, where one word is said twice in a row for emphasis: “soft soft”). Even Rachael and her mother no longer do it, nor do they really talk about it. Fair enough. Our habits of haptic sociality, like tickling generally, can go without saying. It is with this in mind that I think tickling can be regarded as queer, in keeping with how queer theorists have regarded this notoriously slippery term, which does not point exclusively to sexuality or sexual acts so much as to any practices that are hard to define or group into such categories in the first place, thus seeming to crack familiar norms at their foundations. Knismesis is like that, so too are other forms of experiential contact that seem strangely hard to categorize or that have been ignored or even repressed from public discussion. A queer history of common senses is yet to be written on things ranging from tickling, to seemingly newly discovered affects like frisson (a pleasurable shiver one gets from hearing music), or Autosomal Sensory Meridian Response (ASMR, a pleasurable shiver one gets from other sounds).51 Why is it that sensations particular to the skin can be so strange to talk about?52 All of them can be sexual, and so can eating or just about anything associated with the body. But they don’t have to be. This is easier to understand with respect to caregiving, perhaps. In the late nineteenth century and the beginning of the twentieth, a wide range of policies in North America and Western Europe discouraged touching children affectionately (with hugs and kisses, for instance), at the same time and for some of the same reasons that they discouraged self-­touching, such as masturbation.53 While haptic sociality has been more encouraged in recent decades, in part informed by critiques coming from the anthropology of childcare,54 tickling, whether gargaletic or knismetic, is good at raising concern about (in)appropriate boundaries or a loss of boundaries altogether (between childhood and adulthood, between self and other, between I and me). It is late July in the early afternoon. I sit in a local cafe, holding in my urine in order to finish these lines, my stomach full of coffee and half a peanut butter and jelly sandwich I gobbled down to keep me going. I am reflecting on the mixed success we’ve had lately getting Charlie to

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sleep on his own. We have been co-­sleeping with him for over a decade, I can’t remember when we started but I know it started so we could all sleep better. Since that time we have been talking about getting him to sleep on his own, knowing that nightly bodily contact, comforting as it is now that he lives with us, will not be something he can count on after we’re gone. To this end, last night I slept on the couch again, as I have been doing the last month or so. I stay on the couch for now, following advice from a developmental psychologist we saw in Rochester a few years ago (after spending twice as long as that on a waiting list). The living room is right outside Charlie’s door, so he can hear me breathing and, in theory, subconsciously sense my nearby presence so as not to feel abandoned. We are making progress insofar as he will lie down alone, in his own bed, shooing me away before falling asleep by himself. The problem we have is that in the late evening or early morning he will either get out of bed and lie down with his mother in our bedroom or, if she has already gone to work, wake me up and lead me by the hand to lie down with him. Without thinking about our goals or my desire to go back to sharing a bed with my wife, which I haven’t done since he was a baby, I climb back in bed with him and promptly fall asleep, half-­consciously enjoying the idea that Charlie needs me to feel safe, warm, and comfortable. Maybe years from now what we currently tell as a story of discovery, of continually figuring him out and making him feel understood with home signs, we will use to tell ourselves where we went wrong, how we prevented him from growing independent. It’s so hard to know what to do, how to shape or tell the story of our lives. We have so few resources to rely on, people we can imitate to help us feel like we are doing things the way we should. When every encounter feels like improvisation, you can’t help but feel like you’re continually flirting with disaster.

The queerness of touching is not unique to tickling. There is something queer about contact through the skin in general.55 After all, as philosopher of science Karan Barad puts it, from one point of view nothing ever touches anything else: touch, for a physicist, is but an electromagnetic interaction . . . All we really ever feel is the electromagnetic force, not the other whose touch we seek. Atoms are mostly empty space, and electrons, which lie at the farthest reaches of an atom, hinting at its perimeter, cannot bear direct contact.56

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For Barad, this standard view is not actually queer enough, that is, not as queer as the universe actually is. In quantum theory, two beings touching is not so much impossible as it is a series of probabilities searching out one another, somehow resolving a finite interaction (warm, cold, tingly . . .) out of infinite possibilities.57 Named acts of creative haptic sociality (“scratching” or “soft soft”) are physically weird, before any additional ideological or moral weight is ascribed to them as inappropriate to engage in, to do in public view, or to write about for others. The issue of queer sensibilities surrounding touch brings up the well-­ known issue around sensory capacities and autism spectrum conditions, which can include an inability to be touched.58 This is not a good representation of how Charlie experiences contact, as we have seen. But, as Mel Y Chen points out, it is not a good representation of anyone on the spectrum to see them as “affectless,” no matter how much they might prize physical distance at times. For example, Rachael’s cousin, who generally liked to be touched less often than Charlie, liked to have her skin brushed with a special sensory implement, which Rachael never personally liked on her own skin but understood as just another form of “soft soft.” What interests me here, and in this chapter as a whole, are forms of touch that are queer not because they are singular and unique, but because they are so very common yet so rarely analyzed or openly discussed, as if we should be ashamed to communicate by touching and being touched.

Touch in Caregiving There are too many reasons why there should be a lack of attention to tickling. Many scholars have noted a persistent visualism in so-­called “Western” approaches to thinking and living, and this has meant a tendency to “forget” touch as a significant sensory capacity and way of engaging with the world and with one another.59 To the extent that gargaletic tickling, in particular, is associated with unserious play during childhood, its neglect is made even more likely. There has been a general lack of scholarly attention to the largely gendered practice of childcare historically (which is hardly surprising, given that scholars are overwhelmingly wan chums, relatively uninvolved in caregiving), and as a result scholars have arguably failed to “grasp” the creative sociality of touch that is found in caregiving situations.60 Home signs can be identified in the many familiar kinds of social touch, from the casual to the intimate. These make up what Marjorie Goodwin labels haptic sociality, or any contact that “transmits valenced forms of emotion as well as specific information.”61 With Charlie, for instance, this

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includes not only our idiosyncratic repertoire of home signs, but relatively common expressions of bodily contact. One can find haptic sociality within any group of people who are “close” with one another, including practices such as hugging, kissing, shaking or holding hands, back-­scratching, patting, caressing, cuddling, massaging, and tickling. Of course, even these relatively common ways of demonstrating and reinforcing intimacy are done in a different style in our home than in others. Haptic sociality involves what Goodwin and Cekaite helpfully term “mundane creativity,” meaning that when we do such things, we are not following some standardized set of instructions dictated by our culture or community, but improvising a kinesic melody into near infinite home varieties.62 In his ethnography of a care facility for mostly deaf-­blind persons in California, David Goode describes play as something that would make workers and residents happier if they did it more: “By the end of my stay on the ward, I had become a little sad about the way in which the institutional and medical ‘contexting’ of the children seemed to victimize the staff as well as the children.”63 But it is not so simple as that. The queerness of touch, and of tickling in particular, create tensions that can be hard for carers and educators to resolve. On the one hand, many of the people I talked to described some form of regular, haptic sociality as part of their job. Reggie, a white man in his mid-­ thirties, did not talk much at all about touching his client, but added that giving the client regular “high fives” was quite important for their relationship. Debbie, already introduced in this chapter, knew about the benefits of intensive physical contact because of her relationship with her son, now in his thirties, who was diagnosed as a higher functioning and verbal person on the autism spectrum and always loved the feeling of being held tightly. When Debbie started working as a carer for an adult woman diagnosed with a cognitive disability (whom she described as being without a “mature brain”), she thought she detected a similar desire for touch. It seemed her client was very fond of affectionate touch, which Debbie likened, as she often tended to do in our conversation, to immature animals like puppies and kittens that “want the snuggling, want the warmth.” This actually meant ignoring the label that her client’s mother had given her daughter as being “tactile defensive.” Debbie took this assesment to be something the mother had heard from a psychologist that did not fit with the child’s real sensory and motor needs. Howard’s experience is not too different from Debbie’s. A Black man in his mid-­thirties, originally from Akron, Ohio, he became interested in working with people with disabilities when he spent time with relatives living in the United Kingdom and Ghana. His “auntie” had a son with an autism diagnosis, whom Howard would sometimes watch in the

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evenings. Later, as a professional carer watching a nonverbal teenager with a similar diagnosis, Howard learned to use affectionate touch on occasion, including receiving pats on his hand from his client, which he took to mean “thank you” as well as giving “a lot of hugs” and locking arms together when going places. While affectionate touch can be an accepted part of many caregiving situations, it can raise problems as well. Jodie, a middle-­aged white woman, has been working with special needs people for more than two decades. She had first planned to go into radio broadcasting, then worked at a carnival, followed unexpectedly by finding that she enjoyed doing food service at an independent living community for people with Down syndrome. Jodie had never had much experience with disability prior to that. There were two people with Down syndrome in her school, but she had no idea they were even her classmates until they came to prom. After a while, Jodie says, she learned how many stereotypes she’d believed about disability that were wrong. Now working in a care facility for adults with intellectual disabilities, Jodie said she has learned that no two people with a disability want the same thing, even if they have the same diagnosed condition. This includes basic things like a desire for touch: It depends on the person. We have some individuals who do not like to be touched at all. Um, like today I’ve had three people in my office bawling their eyes out because they’ve had rough days. Hugs . . . I have some individuals who like to hold my hand when we go to the cafeteria, it’s that safety blanket for them.

Another problem, she explained, has to do with maintaining professional boundaries regarding touch. There are things the workers at the facility absolutely cannot do with their population: “we’re not allowed to do ­massage . . . Unfortunately, due to like past cases [she pauses for a moment, interrupted by a passing co-­worker], you hear all these horror stories about sexual abuse, so that would be one of the reasons we don’t do stuff like that.” At this point, Jodie went into what she has learned in terms of controlling the touch of caregivers, especially around tickling. We have had some staff that tickle people to try and cheer them up, but like I’m a SCIP instructor [Strategies for Crisis Intervention and Prevention], we teach people to make sure you have proper placement of your hands, so if you know someone walks into the room and your hand is on their back or the small of their back it doesn’t look like you’re touching their butt or something, so it’s to protect you and the client.

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When I interviewed Jodie, she’d been instructing people in SCIP for over a decade. One big change, she said, is that training has veered away from “takedowns and wraps” to focus on “the core moves.” Core moves include where to place hands (for example, on the shoulder), in order to help intervene in crises. Other caregivers for people diagnosed with cognitive and linguistic disabilities expressed similar problems with touch. One of Charlie’s former teachers, Gwen, is a white woman in her twenties and a college graduate. She explained that students are tickled all the time by staff, when prompted; the problem is that there are no clear rules to follow. Obviously we’re not allowed to touch kids inappropriately, that sort of thing. I’ve never been given those, you know, those rules. We do have one student . . . who consistently asks, he’ll say, “Do it!” and he just wants to be tickled. Me, being a female, if he does that to me I’m very particular, like I’ll only do it like up by his face, or up around his neck. I never go below . . . so I have my own standards . . . But the school itself as far as I know does not have a policy.

Gwen is not sure that a policy would necessarily help: I can’t say whether that’s a good thing or a bad thing, because are we meeting that student’s needs by tickling, it could be a sensory thing, um, or should only guys or girls do it . . . I look at it also from a parent point of view because . . . students in here, a lot of them are nonverbal and they can’t go home and tell their parents that they’re being inappropriately touched or even if they are asking “do it” they might have been like, “oh in that moment I didn’t want you to tickle me there, I wanted you to tickle my head,” and they can’t tell you that. I stand 50/50 on it because I feel like we need to meet their sensory needs, they want to be tickled, and I feel like the school just looks at that as “these kids just have disabilities,” however they request, but then I also see it from the other side that we need to be careful as well. Because they can’t speak, they can’t stick up for themselves.

Gwen explained that people often learn tickling habits by observing one another. One person who worked a lot with Charlie, she told me, tickled him a lot, and this put everyone in the classroom in a good mood since he tends to laugh hysterically. In the same way that laughing is supposedly contagious, Gwen suggests, tickling interactions can be, too. She adds that it would have been helpful for her to be informed that Charlie loved tickling

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(by his previous teacher, for instance). People instead have to learn Charlie’s and other students’ relationships to touch on their own, just as they do with their repertoire of home signs. The visual problems raised by tickling or other forms of affective touch have to do, critically, with what they could appear to mean, rather than what haptic sociality is involved. Most forms of contact deemed acceptable in settings like Jodie’s workplace or Charlie’s schools instead fit under the category of what Cekaite, and Cekaite and Holm, call control touch, or forms of haptic sociality that are not primarily nurturing or playful, but rather encourage people to comply with rules and norms.64 In places we have lived, in London and the Southern Tier of New York state, people in childcare, educational, and healthcare settings tend to promote an “instrumental view of touch,” wherein “touch is considered for its therapeutic value (by allowing the client to be aware of her/his body, controlling her/his breath, her/his vocal cords’ vibrations, etc.).”65 This is reflected in Gwen’s comments here, trying to reconcile school policy with student relationships. One clear example of control touch comes from hand-­over-­hand education, which is frequently used with Charlie.66 It is usually through his hands that Charlie is trained, socialized, instructed, and nurtured, by his parents, professional educators, and carers, as it is for many persons diagnosed with developmental delays and disabilities. Hand-­over-­hand (or “self-­modeling”) has been central to our lives. This is how new and undeveloped behavioral routines commence: first, you put an object in their hand—­a writing implement, a utensil, or a hairbrush, but also shoelaces, the zipper of a coat, a ball to throw, a doorknob . . . Then, placing your hands over theirs, you gently force them to perform the action, helping as needed.67 It’s unclear to us how effective hand-­over-­hand training is, but as a form of behavioral training it is extremely common in worlds beyond and beside language. Charlie, for one, would not engage in any learning activity without it (beyond maybe those that involve sitting in a circle or running around). This is one of the reasons why distance learning is effectively impossible for him, as we all discovered during the COVID-­19 pandemic, without having a person co-­present and guiding his hand movements as needed. One problem with hand-­over-­hand training, according to critics who have advocated for alternative treatments and pedagogical strategies, is that it is not clear that people learn best through direct “interactive modeling.” They might learn better through vicarious imitation—­for example, watching someone else engage in the same activity and then doing it themselves. In truth, we do not know how many times Charlie has done just this, that he passively observed us or someone else doing something and then decided to do it himself. Another problem is whether it is ethical to force someone to

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conform to expected behavioral standards when they understand and experience the world differently.68 Do it this way. Come here. Go there. These are commands, bent on control, no matter how gentle their delivery and well-­ meaning their intent. What’s more concerning, potentially, is that this overriding is not momentary, but may in fact lead to permanent habitual changes. After going to the bathroom, Charlie now puts soap on his hands, turns on and off the faucet to run water over them, and uses and puts back the hand towel. But he only does this if I am standing there, even if I no longer have to encourage him with hand-­over-­hand direction. My mere presence, now, serves as a sort of home sign for control touch, certainly in the bathroom. What is interesting, for this chapter, is that tickling can be an even more exaggerated form of control touch, where autonomy is lost in multiple senses. For all we know, Charlie developed a taste for tickling, not out of some “autism”-­related hyposensitivity, but as a way to reassert control over what we make his body do! What makes tickling worth doing, after all, is how it may dramatize, in a deeply pleasurable way, relations of interdependency and dependency that we all once lived with and will one day live with again, one way or another. “Iggle” could be pure fun, but it could also be a kind of critical commentary on how much our hands seek to control his bodily actions and functions.

Queer Communication Almost anything a body can do is capable of serving as raw material for kinesics. As a result, nonverbal messages are communicated not only visually, through signs like gestures or facial expressions, but also through direct contact. But we would be mistaken to think that this makes it a simpler form of communication. We all know that touching can be complex, but sometimes contact is so intense, so strange that it can trick us into thinking otherwise. One of the things that makes tickling strange to talk and write about, whether gargalesis or knismesis, is that it is a form of social touch that feels good (though only for some people), but is not therefore sexual or romantic (again, for some people). When some of my friends read early versions of this chapter, it made them uncomfortable in a way they had trouble articulating. This is one of the reasons I think Charlie’s enjoyment of tickling is worth thinking of as queer. This is an especially appropriate description if one’s definition of the term essentially falls back, not on sexual identity or preference, as is often assumed, but on transgression, that is, acting without shame in the awareness that others find your actions shameful.69

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The other day, Charlie turned sixteen. It’s midday in the summer of 2022 and it has occurred to me that now when he asks to be tickled, it might look out of place if someone saw us—­two adult-­sized figures rolling around and grabbing at each other, laughing. Yesterday he drew me close to him and requested that I tickle in a different way, with him flat on his back on his bedroom mattress and me sitting beside him on the bed, a comforter covering us both entirely, head to toe. When he requests this particular variation of gargalesis, I am always reminded of playing “parachute” as a child in gym class, where we would form a circle, each of us holding a part of a sheet, allowing it to billow first like a massive tent, then at the same time let go and run underneath quickly as it fell upon us, covering all of our bodies like one massive creature. It felt dangerous and safe at the same time. With only my head poking out of the blanket covering us both, I splayed my twitching fingers, which slowly crept toward his torso. There was a wide grin on his face, and he giggled in anticipation. It’s then that I notice people sitting in the courtyard, no more than ten yards away, visible through his window, enjoying the June midday warmth. They could have seen us if they looked to their left, but it’s unclear to me what they would be able to discern through the window. Worrying about possible misunderstandings, I lower the blinds to provide us with some privacy. Then I wondered more and worried what they might think was going to happen if they saw me do that, why it is I suddenly wanted privacy. I tickled him anyhow.

From one perspective, any form of pleasure for people diagnosed with severe disabilities is taboo.70 This is especially the case with sexual feelings, but any kind of pleasurable touch can elicit discomfort. As Alison Kafer points out, it is much more common to discuss pain and suffering among disabled subjects, as if this were expected and demanded of them.71 The politics of playful social touch therefore matters. It would not be an exaggeration to say that for Charlie, tickling basically is sociality as a positive force, that is, something that other minds and bodies are actually good for and good to think with. Tickling is one of the few interactive experiences that he has developed specific home signs to initiate and direct. This is particularly challenging, since tickling only works if there is a loss of control over one’s own body. More precisely, that control is given over to another person. This impels Charlie to seek out and be with other people as few other things can. I have suggested that the interpersonal dimension of tickling

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is such that he has learned to recruit gargaletic dynamics into knismesis as well, meaning that his favorite kind of tickling has become not just one dramatic form of social contact, but a model for how to incorporate other forms of affective touch into pleasurable circuits of I and me, self and other. Charlie loves tickling. I wish I could make you understand just how much. But maybe that’s for the best, because home signs should not be romanticized as if they were always positive. At the same time, sometimes home sign stories are so moving they make me cry, especially when they involve physical contact. That’s how I felt, in 2009, when I first read about college basketball player (and eventual WNBA star, MVP, and champion) Elena Delle Donne. After we moved to London, I was drawn more to American sports media, partly because I was lonely and missing my national “home.” Also, I could more easily follow sports podcasts or read sports columns while up late at night with Charlie. He slept very erratically at the time and following sports helped me stave off the desperation and despair that, many caregivers know, can accompany prolonged sleep deprivation. I remember it was shortly after we were told our son might never speak again that I read about the Delle Donne sisters. We were still in shock from the news about Charlie. It had shocked the American sports world when Elena Delle Donne chose to change college programs in order to be closer to her deaf and blind sister, Lizzie. Delle Donne said at the time, “I have a lot of personal issues to fix . . . Only my family understands what’s going on. Right now I am going to take a long personal break.” The reason was simple: the two were close but could not communicate at all without physical contact. Lizzie is also diagnosed on the autism spectrum and with cerebral palsy. As sportswriter Sarah Spain described it, “being at UConn meant losing all connection to Lizzie, and an 18-­year-­old Delle Donne just wasn’t ready for that loss. She enrolled closer to home, at the University of Delaware, and eventually found the balance of family and basketball she needed.”72 Not surprisingly, there was backlash at the time over Delle Donne’s decision, primarily from nationwide fans of the University of Connecticut team that she seemed to spurn in order to return “home” to Delaware. But the backlash also included former UConn players, one of whom told a local newspaper: “What a waste. It’s the most bizarre thing I’ve ever heard. To have an opportunity like that to play, obviously, at the best college women’s program in the world . . . and she threw it away.”73 Critics of her decision were either not aware of the Delle Donne sisters and their story, or it did not affect them, resonate with them, as much as attachment to their “home team” did. Academic nonfiction is not meant to be heartwarming. While it is normally okay to describe abject misery and suffering, since that lends

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seriousness to one’s prose and perspective, anything that sniffs of maudlin sentimentality generally has about as much place in one’s scholarship as do details about celebrity culture or sports gossip. I introduce all three here, first, because when I first heard the story a decade ago, it affected me, and I think of it often. It’s at least part of the reason Charlie and I tune in to watch Washington Mystics games when Delle Donne is playing (though it’s mostly because she is just so good at basketball). Second, the experience that these two sisters had is a familiar one to many people in intensive home-­signing situations, as one of the perils of socially reinforced distantism: the denigration and dismissal of communication through touch. Partly for this reason, crossing or canceling distance through touch can be a perilous and productive enterprise, a ticklish undertaking. Charlie can see and hear, but, as with Lizzie Delle Donne, you cannot expect to have a meaningful connection with him without being in his direct presence. This is not only because of literal touch but also because learning new home signs and figuring out what they might mean takes time and repeated exposure. You need to practice them as you would practice a sport. I am not a basketball star, but I am a cultural anthropologist, and there is a normal expectation in my field that I should be looking to conduct long-­ term fieldwork far away from “home.” I have long since given up on this, and the reason is the strain that such sustained distance would place on our home signing. The truth is I often think that I am not really an anthropologist. I have long conversations with myself to make me feel better about this, but like a stereotypical American I have done only basic language training beyond my monoglot standard English. Unlike many fellow anthropologists I know, I do not have a “field site” somewhere that I regularly return to in order to reconnect with the people I conducted research with and gather ever more data. Sometimes I tell myself that the things that interest me and that I have written about (waste management, science and technology, environmental crises, the military industrial complex, climate change, fitness, video games . . .) do not fit into this traditional way of doing research anyhow, that I am just a different kind of anthropologist or anthropology today is different or should be. Or, I think, maybe this book is just a shameless (queer?) attempt to impress others with my bonafides as a “real” interpreter of radical difference, and I am exploiting my relationship with my “inaccessible” son to gain the respect of other anthropologists, to be seen as or to finally feel like one of them. Part of me believes that and that fear is

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bad enough. It makes me feel even worse when I occasionally blame Charlie for my professional anxieties. “If only I could leave for longer stretches without throwing my family’s sensitive routines into chaos,” I think, or “if only I could bring him with me into the field the way my friends do with their children.” But that’s just more wan chum bullshit.

The value of distance impacts our lives in many different ways. Being distant, in English, is considered tantamount to remaining stoic, cool and detached. To be untouchable, similarly, means no one can harm you or interfere with your intentions. The value of distance is equated with not getting too close to others and therefore remaining reasonable, objective, disinterested. Proper distance means remaining unsentimental. The demand for distance in scientific practice is one of the reasons that auto-­ethnography is relatively rare and sometimes looked down upon. I am no more supposed to write about hugging or tickling my son than I am supposed to write about the love between two sisters that rippled across an ocean and moved me to tears. But here I will, distance be damned. Distantism is perhaps harder to recognize since the COVID-­19 pandemic forced many people indoors and online for a far greater proportion of their interactions. Everyone now misses in-­person social interaction, or so the story goes. Being co-­present is, of course, a relatively human constant, yet a central component of the kinesic codes we learn is how close to be to one another, how much “personal space” we want for ourselves and are expected to give others. Such proxemics vary depending on social intimacy (you may get closer to people you know well, for instance) or individual style.74 The Americans I grew up with would say that some people are “close talkers,” just as people in my family “talk with our hands.” At the same time, very few, if any, standardized kinesic codes encourage people to almost exclusively communicate with others through touch. If Charlie ever comes into your orbit, you’ll know you’ve gotten to know him when he has started to disturb your personal boundaries, at least a little bit. The weirdness of contact only gets weirder if you look into leading theories of the human subject, most obviously Freudian psychoanalysis, which suggests that we are all obsessed with contact, that we need it, desire it, and are driven by it at all times whether we know it or not. And this goes beyond sexual desire or sexed identity, per se. Our oldest memories and experiences, for Freudian Melanie Klein, were based on body parts we shared with others, such as a mother’s breasts, not to mention all the toys and things we needed to fill that hole once we lost them. Whatever one thinks of these ideas, and there are many more such, they are at odds with the separation between communication and touch made possible by

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telecommunicative devices (phones, televisions, computers . . .) and by ideological distantism, which arguably helped banish challenging kinds of affective touch, such as nursing, hugging, or tickling, from sustained and serious consideration (with the exception of some renegade psychologists and chimps, of course). Personally, I don’t want to touch or be touched more by the people I communicate with on a day-­to-­day basis—­if anything, I probably avoid touch with nearly everyone but Jeanne, Charlie, and close relatives. And yet, out of all of these people, there is no question I touch Charlie the most and I would not know him at all if I did not. I therefore also know that a world where touching was less taboo or less denigrated would be one more welcoming for Charlie or Lizzie Delle Donne and their lively sociological imaginations. That might make me uncomfortable, but maybe I should be. Maybe it would be better for nonspeaking people like Charlie if more of us were.

[ C h a pt er Thr ee ]

Technically Speaking

Whenever new people come into our lives, we have to bring them up to speed about what Charlie is like. Over the last decade, new bureaucrats, teachers, aides, acquaintances, and carers have taken to asking whether he can speak using tablets. They likely do so because they are aware of the widespread and growing popularity of speech-­facilitating apps, such as Proloquo2Go, QuickTalk, or iCommunicate. These have been specially designed to mediate spoken interactions between variously “impaired” users and the people they live with and might encounter. These apps are meant to be a bridge, in a sense, between home signs (which might be exclusively interpreted by only a handful of people) and the wider world of signs. These apps have never worked for Charlie, I always feel obliged to tell people. But, oh, he does love his tablet! Almost everywhere he goes—­school, home, the park (though definitely not the bath or pool)—­our cyborg son has an iPad in tow, which he uses to continually play his choice from a selection of songs and videos we’ve downloaded. Sometimes it seems that the tablet is interfering with his social interactions. Rather than a communication aid, in our minds it is something that diverts his attention from other people, from learning new skills, from gaining independence. As I write this, it is the first day of 2022. It’s in the early evening, and I am keeping my appetite for dinner at bay with a steady diet of black coffee. Jeanne is picking up food to cook, and Charlie is behind me, sitting on the couch and playing with his tablet, skipping between scenes of an episode of the children’s television show Shake It Up that I’ve heard thousands of times. It is easy to ignore—­for the most part it fades into the background—­but I also use the sound to track his movement around the apartment based on how loud it is (he always keeps it at roughly the same volume).

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Jeanne texts that she is on her way, and I hear him move into the kitchen, listening carefully as the fridge opens. I stop working to help him get a drink, taking a moment to help him sign “thirsty” in ASL, by first helping him to extend his index finger and then drawing it from his lips downward in a vertical line. We have been doing that lately with mixed success, since he does not do it spontaneously—­on this occasion he barely looks up from his television show as I mold and move his hands to form the formal gesture.

We tend to see the tablet as an object that stands between Charlie and our goals for him. But maybe I’m wrong, maybe we’re wrong.1 From another perspective the tablet might help us communicate with Charlie in new ways, and he with us. This is not because he uses it as people tend to imagine—­to have a “voice” mediated by language-­learning applications—­but because of his close and closed-­off relationship with it. It so completely absorbs his attention and is under his complete control, in a way that contrasts sharply with ordinary socializing. For instance, sometimes Charlie tosses his iPad aside as if hurling a frisbee to no one in particular. And he tends to do this as if he wants to communicate that he would like to spend time with us, one on one. It is as if he were adding emphasis to that desire, underlining the shift in his attention—­making use of the built-­in contrast between time with us (no iPad) and time without us (iPad). If I have this right, then in these moments the material object of the tablet implicitly embodies his desire to be left alone. It does this so clearly, in fact, that its dramatic, frisbee-­like rejection becomes the perfect means to express the opposite desire, when it arises, to be intensely social.2 So maybe when we refuse him his iPad—­before school, in the bathroom, before bedtime—­we are similarly communicating to him with a home sign that the situation has changed, reframing it, or changing our footing, as sociolinguists like to say.3 Therefore, it is not only an obstacle. Or, better said, it is not just any obstacle, but such a clear one that it can be moved or removed in ways that communicate a barrier crossed, a new interaction begun. Charlie’s use of tablets is not equivalent to, does not stand in for, English or ASL. But if instead it is thought of as part of his home-­signing activity more broadly, then things appear rather differently. Without the pressure of approximating formal language, we can see objects like tablets participating in or facilitating social interactions differently. As I argue in this chapter, doing this also opens up ways of rethinking familiar and longstanding debates about attempts to communicate with those

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who don’t speak—­specifically great apes in captivity and people diagnosed with communicative disabilities. Humans and apes are not the same, but formally similar tools have been developed historically to help them overcome an apparent absence of language. In all these cases, I argue, scholars, parents, and carers remain skeptical that these instruments have achieved or will ever achieve what their proponents claim. More specifically, in this chapter and the next, I argue that this skepticism is related to a basic paradox at the heart of language habilitation with alingual subjects of whatever kind, which is their dependency on other people and things to communicate. Such dependency is implicit in the “home” part of “home sign,” as if a familiar or even familial setting is needed for new kinds of understanding. If those who communicate with the aid of language habilitation techniques generate controversy, this is because home signs are more than this, they also prepare the groundwork for habilitation of any kind, successful or not. And this sheds light on some dominant assumptions, ideologies really, about who can speak and how.4

Object Language I think my earliest memory of equipped linguistic agency was through cruel and ableist comedy. I remember one experience as a teenager at Babock Hovey, a Boy Scout summer camp on Seneca Lake in central New York. A few of us were in our lean-­to, wasting a few warm afternoon hours between merit badge acquisition and chores. I remember laughing along uproariously to a 1992 cassette tape of Dennis Leary’s No Cure for Cancer. As part of his routine, Leary mocked and imitated someone with an electrolarynx: I’m looking forward to cancer, man. I want that throat cancer. That’s the best kind. You know why? You get that throat cancer, you get that voice box thing. Know what I’m talking about. [Using the microphone to imitate an electrolayrnx] Sure it’s scary, but you can make a lot of money with a voice box. Get a voice box, walking around the streets of Manhattan: [Imitating electrolarynx] “You got any spare change?” “Ahhh!! Here’s my whole wallet, get away from me! Ahh!” Imagine a whole family with voice boxes. That’d be creepy, wouldn’t it? They’d be out in that backyard everyday during the summer. [Imitating electrolarynx] “Dad, can we go to the beach?” [Imitating electrolarynx] “Yes, get your mother and the dog. We’ll leave right now. Sparky, come here.”

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[Imitating electrolarynx] “Arf Arf Arf Arf Arf Arf Arf ” “Ahhhh!!”

For me, at that time, real-­life cyborg speech was something to laugh at in horror. Looking back, part of the joke was that the people speaking in this fashion were assumed to be to blame for having a voice box in the first place. Their decisions led to this, after all (a “choice” mockingly given voice by Leary: “I’m looking forward to cancer, man”). Voices mediated through an electrolarynx might be recognized as full speech (leaving dogs to one side), but are here simultaneously marked by assumptions of personal responsibility and public health, as voices of the morally weak and inferior, rendered scary and funny. Another aspect of our laughter may have to do with assumptions about language in general and its relationship to the material world and material things. Language is often characterized as if it were immaterial, mental, abstract. That idea has inspired linguists from the ancient Sanskrit scholar Panini to the Swiss linguist Ferdinand de Saussure to contemporary American linguist Noam Chomsky. For centuries, influential scholars such as these have seen language as actually or ideally something other than specific mouths speaking, ears hearing, hands signing, eyes reading.That idea of language is also reflected in remarks like “talk is cheap” or “all talk and no action.” These assumptions are better understood as ideologies about language, rather than accurate descriptions of it.5 Led especially by research of social scientists like Bates, and Ochs and Schieffelin, it became clear that learning language is not a purely internal, mental, or innate phenomenon, but a social and practical achievement.6 Language learning is thus not a natural guarantee, but a likelihood reliably reproduced by habits that are biological, cognitive, and social. It is possible for things to develop otherwise, as they do for people who never speak or who one day stop speaking. Our voices, gestures, brains, and scripts are physical entities, like anything else, which means they can be damaged, lost, enhanced, and so on. As I have said from the beginning of this book, no one starts life speaking, and many people end life not speaking. But many take language development for granted as a stage-­like and fixed process, such that any interruption in the acquisition and possession of language demands an explanation (whether epidemiological, magical, divine . . .). As I noted in the introduction, the Latin-­derived term “infant” (in-­fant) comes from “not-­speaking,” which marks an entire developmental category, and leaving it behind, as if it were defined by gaining speech.7 This ideology, that people naturally speak, becomes apparent when some persons and beings speak through objects and others do so not with

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vocal cords but by means of other people and things. This seems to touch a nerve, at least for some people, which I characterize as an unspoken conviction in the naturally speaking subject. By this I mean the assumption that every human being speaks and does so nakedly, unadorned, and unaided by technical means. Here is where assumptions about language’s immateriality meet ableist characterizations of Homo sapiens as the symbolic species. After all, if language is primarily seen as mental and ideal, it only makes sense for it to be located somehow in our brains, as Chomsky, most famously, would have it. Thus, naked, unequipped, save for their supposedly innate talents, the cultural figure of the naturally speaking subject lurks behind depictions of linguistic action and the human condition generally. Brian Keith Axel describes this as an aspect of a “modern linguistic ­ideology” unwittingly propagated since the Cold War, which conceives of the human “as a naturally speaking being and as the material and corporeal origin and agent of communication.”8 Axel sees two consequences arising from this: “the fetishization of the human body as the place of origin of communication in the form of speech, and the projection or objectification of technologies of communication as instruments of prosthesis.”9 According to Axel, a belief in the naturalness of human speech creates a paradoxical desire in the twentieth century to imagine people using prostheses—­ phones, televisions, the internet—­to do so. It is as if we demonstrate our innate mastery of immaterial language by extending out linguistic agency through the ever growing range of devices in the object world. Problems arise when linguistic actors appear to be the instruments of their prostheses, and not the other way around, when their “natural” ability and desire to communicate is placed in doubt, and when their ability to be recognized as one who speaks is compromised.10 In anthropology, the naturally speaking subject finds expression in the caricature of the symbolic species, the meaning-­making ape. Recent genealogies, Axel’s among them, have called attention to the influence that US government and military sponsorship had on anthropology prior to and during the Cold War, and the importance of the parallel wartime intellectual projects of behaviorism and cybernetics, both of which incorporated terms and tools from engineering in an attempt to bridge the social and natural sciences.11 In this chapter I consider contemporary techno-­ scientific, experimental trials arising from these epistemological traditions, including the Picture Exchange Communication System, or PECS, where impaired language learners represent a problem for semiotic reengineering. My own focus is not the historical origins of communication epistemologies or technologies, but the moral and ideological implications that surround “who speaks” in contemporary linguistic encounters

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involving seemingly unusual language learners.12 What happens when a language user appears unusual, has a diagnosed disability, or belongs to another species? Can they ever become a full-­fledged linguistic agent? Who gets to decide whether they are recognized as such and by what methods? My approach follows linguistic anthropologist Mark Sicoli, who argues that any situation is likely going to involve both relationships with things and relationships with people, so all should enter into one’s analysis. Based on ethnographic and linguistic research with Zapotec speakers, what is called for is attention to the multimodal assemblage involving objects and ideas about them, practices with them, and not only other people in an interaction. He writes that signs are “arranged as meaningful relationships in which simultaneous and sequenced actions are brought to bear on each other. These relations are not the product of a single person but intimate engagements between participants that can be human or nonhuman, animate or inanimate.”13 Moreover, due to “the shifting dimensionalities and contradictions of copresence,” people routinely hop between using words, limbs, faces, and the materials around them while communicating, in an open-­ended and somewhat unpredictable way.14 This makes any analysis that focuses on spoken language alone inadequate since “participants have in their experience a gathering of talk, bodies in motion, action with objects, and the being in futuro of participants’ orientation to the relations, obligations, and reputations coming into being in the present moments of interaction.”15 When language is being taught to “unusual” others, a lot is involved (people and things) and a lot is at stake (relations, obligations and reputations among them). In what follows, I examine situations in which an artificial platform, a communicative device, is meant to serve as a prosthesis that makes up for “internal” deficits, in some cases enabling forms of linguistic or proto-­linguistic skill. I describe these assistive forms as home sign equipment for two reasons.16 First, I use “equipment” in order to highlight the distributed nature of socio-­cognitive competencies and challenge internalist, idealist approaches. Second, I use “home sign” to point out that, whatever linguistic skills are or are not born of these prostheses, they involve relational innovation unique to specific contexts of ­communication. This is often missed by those who rush to “debunk” claims of materially mediated linguistic prowess among diagnosed disabled people and captive great apes.

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Transatlantic PECS It is a mid-­morning meeting in a small trailer adjoining a South London primary school in the autumn of 2010. We are visitors to a “special school” for children diagnosed with autism spectrum conditions, our children. As they begin classes for the day, we consume tea and biscuits, and discuss strategies for developing life skills and coping with everyday challenges. The composition of the morning group changes from week to week but, like the school population as a whole, is a mix of lifelong Londoners and recent immigrants, predominantly from West Africa and the Caribbean. I’m aware of being the only wan chum and the only American in most group meetings like this, as I was for all the “Early Bird” training sessions provided by our local London borough after Charlie was diagnosed. At this point it has been only two years since I received my PhD and my professional employment is precarious. So there is a part of me that wants to show off my intellectual prowess in any group of nonacademics, hoping they might provide me with the validation I otherwise feel I lack. I am aware of that petty need, so I try to keep my mouth shut and listen as much as possible. This is partly because I am troubled by my pride and privilege, but also because I am electrified by the thought of hearing from people with similar experiences raising children on the spectrum. We’re there to share secrets that normally are kept hidden in public conversation. I remember thinking, “here we can be honest.” Despite our obvious differences, we recount strikingly similar experiences raising children with social, linguistic, and cognitive impairments in the United Kingdom. At one point, the group leader, a special needs consultant to the school, mentions the Picture Exchange Communication System (PECS), so called because it involves substituting the exchange of visual icons for that of words. Reactions among the parents present are characteristically mixed. Unlike tickling (chapter 2) or pinching (chapter 1) and many of the home signs I’ve discussed so far, with PECS communication is not about bodies in direct contact. It is carried out by means of material things. In place of an exchange of words, and standing in for them, PECS involves giving and receiving small tokens, usually 2 × 2 inch visual icons printed on paper and laminated. Symbols are collected in a “PECS folder,” a small binder with pages lined with strips of Velcro on the inside, allowing symbols to be lined up as they are learned. PECS is one of few reliable developmental tools available to special needs practitioners in England and the United States. Some speech therapists I met referred to the PECS binder, with its store of small picture-­symbols, as the child’s actual “voice.” For this reason,

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it was frequently introduced at training sessions and meetings like the one in London as an option to consider. Sometimes it is the only option. Most of us became aware of PECS shortly after our children received a diagnosis and, by the time our children began school, had already tried it. Jeanne and I had been using PECS with Charlie for more than a year at that point. But we never did it consistently. During that meeting in the trailer, several parents confess that they have stopped using it altogether. One attributes this to their child losing interest. A few mothers offer different reasons, expressing concern that signing with physical objects will actually hinder development, not bring about speech. If their child is nonverbal, they worry that PECS will impede speech acquisition. If the child is at all verbal, they worry that the child will regress. Danilyn Rutherford describes a similar fear about a related assistive technology interface: Communication lures us into the depths, toward the invisible intentions that define the modern subject . . . But our loved ones have taught us that communication is just as much a matter of surfaces, of the sensations that swirl around a touch, a sound, or a sight. We yearn for transparency, even as we learn to connect in ways that lead us to rethink how and why we form social bonds.17

PECS is not the same thing as language, it seems, even if it is supposed to help build linguistic or proto-­linguistic skills. But based on experiences with PECS I observed in English and American workshops, schools, parent group meetings, and at home, it is not exactly home signing either, since PECS is an established and inflexible language training system that does not allow for deviation from the scripted interaction. Instead, over time, it appeared that, whether or not it leads to language, PECS training definitely can lead to new and structured interactions, that is, to forms of connection that lead to a rethinking of social bonds, in Rutherford’s words. Children using PECS don’t always learn language, one educator said to me, but they do learn PECS. More than that, I also think that, perhaps going against the intentions of PECS designers and practitioners, the system also relies on or recruits home signing in order to work at all in the first place. In other words, even if PECS training is standardized, every specific attempt with a new individual begins with a novel set of signing relationships they already bring to bear on the practice. Sometimes Jeanne and I think Charlie might be using his collection of songs in the iPad to communicate with us, but we don’t know for sure.18 Any psychologist trained in Applied Behavioral Analysis

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(ABA) would tell us that we have no way of knowing whether he really is choosing what he wants to see, let alone understands what is being sung or said. It could be that he just randomly moves his hands around the tablet knowing that this motion leads to a variety of visual and auditory stimuli. It would therefore consist of an indexical icon (mixtures of contact and contrast), based on spatiotemporal proximity and repetition, rather than symbolic discrimination. But I know of one time, in mid-­April 2017, we were visiting my sister in her house in Pittsburgh and I was feeling depressed about a meltdown Charlie had just had around bedtime. This had involved the usual behaviors, hitting and pinching me and himself, screaming, waving his limbs around, pacing frantically, and biting down on the collar of his shirt. My relatives have seen this before, but it is still painful to show how inept we are at managing his feelings and actions in front of others. We always worry, in particular, that his young cousins will start to fear or dislike him. And when I think about when we are gone and Charlie is probably still alive, probably in a home or institution for people with special needs, I want to believe that his cousins will still visit him and feel connected, rather than pretend he doesn’t exist because we don’t.

Here is how we learned to do PECS originally. This reflects what it was like for decades prior to electronic devices becoming more widely available to English and American students, at least in wealthier school districts, since these relationships to technology are typically uneven and unequal.19 At the beginning of PECS training, there are usually three participants: the learner, the prompt, and the teacher. Between the learner and the teacher is the PECS book, which usually contains sheets that will eventually store the learner’s personal collection of “symbols.” First, it should be noted that, while they are called symbols, in a way this is aspirational since the point of PECS training is to gradually turn them into symbols from the iconic indexes and indexical icons they initially serve as. Without getting overly technical in terms of the semiotics involved, there is co-­production of meaning through contrast and contact involved in different ways, in the initial stages, and that is meant to give way over time to the co-­production of meaning through symbolism. At first the prompt stands behind the learner, out of sight; only the teacher speaks. There is only one symbol on the book, a laminated square image affixed with Velcro. The teacher presents the learner with the motivator (often food or a toy). The assumption is that the learner will already have a desire for the motivator before the trials have begun. When the

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learner reaches for it, the prompt guides their hand from behind, moving it to grasp the symbol on the PECS book.20 Using hand-­over-­hand assistance, the prompt helps the learner to give the symbol to the teacher. When the teacher receives the symbol, they name the motivator (for instance, “apple”) and give it to the learner. Over time, the prompt aids the learner less and less, until the action of reaching for the symbol to request the motivator is done out of habit. To counter the tendency to favor regularity and fixate on sameness, the learner is then encouraged to dissociate the exchange of symbols from particular people and contexts, such that they begin to generalize the practice and become more persistent with communication. Finally, in the discrimination phase, the learner begins to associate particular symbols with particular motivators. As the learner acquires familiarity with more picture-­object combinations, their PECS repertoire grows into pages and pages of symbols. Eventually, they are meant to arrange them into quasi-­sentences on the Velcro strip at the bottom of the folder. This is all part of the legacy of William James, again—­at least due to his mentoring of his student Edward Thorndike, whom he supported for doing experimentally controlled work on how best to teach animals to learn. James even went so far as to allow Thorndike to keep his chickens in James’s basement.21 Thorndike’s experiments, like Cannon’s, also involved cats. In his case, he put them and other animals in puzzle cages to see if they could get out and learn how to do so in what conditions. These experiments led to his “law of effect,” which argued, to put it simply, that there was a general law behind learning.22 This, he argued, had to do with clear associations in time and space (contact) based on rewards and punishments (contrast). That particular night in Pittsburgh the meltdown only lasted ten or fifteen minutes and afterward Charlie calmed down and wanted me to come close to him, which he often does afterward. Jeanne and I see this as him trying to “make up.” He looked into my eyes and hummed quietly. I don’t know if he could sense how I was feeling, but at that very moment when I felt utterly defeated, he appeared to deliberately select a specific Backyardigans episode, Fly Girl, one of dozens on his iPad. Having chosen it, Charlie immediately scrolled forward with his index finger in order to start the video at the beginning of a specific song in that episode, toward the very end, something he often does. That song we had heard hundreds of times before and is called “Thank You.”23 The lines he played go like this:

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Pablo: Thank you. Tasha: We just want to say “thank you.” Tyrone: We’re not mad, we’re glad! And we want to say “thank you”! He played that over and over again, rewinding back to the start after each time, the whole time looking intently into my face. Eventually I cried uncontrollably and hugged him. For that moment, at least, I was convinced he was speaking to me.

Well before I began writing this book, Jeanne, Charlie, and I were encouraged to adopt what I now recognize as distinctly Thorndikian (and more broadly pragmatist) ideas about learning. Beginning with mandatory “early bird” training we received in London when he was first diagnosed as a toddler, we have learned to target the consequences of Charlie’s actions that we want to encourage.24 So we constantly praise Charlie when he communicates at all, rather than ever wonder what is really going on in Charlie’s head. This approach had an enormous influence on psychology in the United States for the next century. Many people are familiar with the growth of behaviorism from Thorndike’s ideas, against and in response to which Chomsky’s cognitive turn was largely formulated. Less well known is that Thorndike’s ideas never went away, but remained standard within therapeutic measures used in unusual situations of language habilitation. The law of effect, in effect, led to new ideas about how to teach individuals to talk (whether animals or people) who do not or cannot do so through normal means. The motivators are meant to inspire learning by creating an effect on the learner that makes them want to learn, connected to the satisfaction of their inner desires. In other words, it does not matter what is going on inside, in the mind or body, only how they act in controlled situations. Instead of consciousness being ideal and hidden, it is turned inside out into objects and things that can be held in one’s hands and given back and forth.25 The learning goal of PECS was to train alingual subjects to grasp several characteristics of formal language that linguist Charles Hockett called design features, most crucially arbitrarity, semanticity, and displacement. In this way, the originators of PECS were arguably “confusing language’s functional uniqueness for its ontological essence,” as if language is learned and practiced primarily by learning to refer to objects in the world.26 This view of language as a “closed system” is problematic. Yet, importantly, these are all design features that home signs may appear to lack. Without arbitrarity, communication fails to be fully symbolic and is entirely dependent on cognitively recognizing instances of actual contact and qualities of possible similarity or difference. Arbitrarity helps make possible

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semanticity, the recognition that one sign refers to one specific idea or object. Together, these two design features, help make possible the third, displacement, the ability for signs to be interpreted apart from what they refer to. Displacement makes it possible to talk about the past or future, or to imagine things no one has ever seen.27 In PECS all three of these design features were encapsulated by the discrimination phase, which Charlie always struggled to get past. Our PECS advisors from the school district came up with a way to try to help him. We would present Charlie with two PECS symbols each time: one that was meaningless (that is, did not stand for anything) and one that was meaningful. The latter was always food, since it was hard to get Charlie motivated enough to choose anything else. Deep down he is an anarchist. Charlie’s desire not to be tested, to avoid giving in to the demands of any authority figure, is usually stronger than his desire for anything else . . . except sometimes food. So we would show him the PECS folder with two symbols. The meaningful one was a small, square symbol standing for pasta, the motivator (at the time and still today his favorite meal). Also under guidance from his teachers, we shifted from using drawings of motivators to more literal copies in the form of small photos. So one was a gray square and the other was a photograph his teachers had taken of a plate of mac and cheese, printed out, laminated, and attached with Velcro. But it was not enough for Charlie to choose the right token when we put the folder between him and his meal. He needed to select it, hand it to us. To make sure he was looking at the symbols and distinguishing between them, we also were instructed to rearrange the placement of the symbols in the PECS folder each time. It is now years later, and we are doing the exact same thing, though now with an iPad using the app Proloquo2Go. Only now we are trying to get him to tap the right icons on the screen to choose not pasta but, of all things, his iPad! If we do not rearrange icons, whether in a PECS folder as we used to or on the iPad screen, he might just get into the habit of snatching whatever is in front of him and handing it over. The law of effect can only take hold in the right conditions, so we are told. We did this for a time with PECS folders. Present the folder, encourage him to hand over a symbol, give him pasta if it’s the right one, start over if it’s the wrong one. Rearrange the placement of the symbols, do it all over again. If done correctly, none of these actions should involve any other communication, not words of praise or criticism, not helpful gestures like pointing to the right symbol, nothing. This made Jeanne cry the first time she witnessed it done by someone else than us. We watched at his first, ABA-­intensive school in Binghamton

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from a closed-­circuit television years ago, as a teacher we did not know worked with him across a table and offered no expressions, no comments, nothing. They were not being cruel or callous to him, she knew, but it affected her all the same. It was as if he wasn’t a person.

In practice, of course, this was not possible. Sometimes Charlie would push the PECS folder away, a home sign for “I don’t want this now.” Sometimes he would decide not to eat at all when he would see it near his food, a sign that he was defying the exercise even if it meant starving himself for that moment. But Charlie’s most common way of defying the exercise, then and now, is to look away while grabbing symbols or tapping icons on a screen. If he did this over and over again, even if I moved the symbols around, eventually he’d get food out of it. There was a fifty–­fifty chance each time, after all. That might be frustrating, but he ate either way. From our perspective, he was too good even then at home signing, at expressing his intentions and modifying interactions without symbols, to the extent that he could work around them if need be. Charlie’s maneuvers to work around PECS continued when we shifted to electronic devices. On both sides of the Atlantic, speech and language therapists over the years have moved from using traditional PECS folders to having us use Proloquo2Go or other apps on tablets. Charlie’s iPads all look fairly distinct because of how we insulate them. Years ago we found a service that created rubbery, rectangular borders for tablets, to protect them from damage. Usually they are brightly colored (Charlie’s are bright green and light blue), which has allowed us to try to offer a distinction, a visual contrast, between tablets meant for fun and those meant for schoolwork or language practice. I am not sure the manufacturer of those rubbery tablet cases still makes them, but we keep reusing them, even as we replace Charlie’s tablets roughly every two years or so. (The reason why we need the borders, and why we periodically replace the tablets, is Charlie’s use of the tablets to communicate, by throwing them or casting them aside, as mentioned earlier.) But not long after moving to Binghamton, we were asked to switch back to practicing PECS at home with an actual folder, not with his iPad. At that time, his tablet was going to school with him every day. But his teachers gradually noticed that it had become such a motivator (a way to reward him with videos) that it was hard to make it a PECS binder at the same time. Over the years we sent in new and different food items and toys to try to draw his attention. Every year he made some progress but never advanced to reliable discrimination beyond momentary success in carefully orchestrated scenarios. That being said, Charlie seems perfectly capable of differentiating

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between the symbols on his iPad that distinguish between different television shows he wants to watch. He selects those quickly and decisively. We just lack the desirable Thorndike-­like control to know for sure. He may not be discriminating them, he may have just memorized the exact location of each specific icon on the menu before him and the show it represents (we do not move the icons on his tablet around, so he can rely on knowing where each one is in the list before him without necessarily knowing that the object stands for a particular episode, as if it were an arbitrarily referenced and semantically specific symbol). Today, carers of people diagnosed with cognitive and/or linguistic disabilities normally have encounters with alternative language devices of different kinds, currently through electronic tablets. Whether in the form of old-­fashioned PECS folders or new tablets, these devices are what I call home sign equipment. As such, they sit between language and not-­language and represent a potential challenge to familiar developmental stories and the ideologies they assume. Nearly a decade after I first encountered PECS, and an ocean away, I heard of parents with similar concerns when I interviewed Gwen, Charlie’s former teacher in Binghamton. Gwen described how she and her colleagues had come up with a way to prompt one of their less verbal students to use simple words and sentences rather than fall back on her device, which, Gwen worried, “she would get hooked on.” She explained her fear that the student wouldn’t be able to start building on, building those sentences and I know that is one thing that her [parents], when I have talked to her parents, they said, you know, “we’re having her trying to speak sentences at home and make sure she’s saying ‘please’ and ‘thank you’” . . . With those statements I think they don’t see a need for a device either.

Both Gwen and the student’s parents share a distinction between words and sentences spoken independently of a device, and those spoken with its help. They seem to agree that the former is superior and that the latter can get in the way of development and expression. If some home signs are disregarded as inferior to language, a degenerate form of communication, communication through devices is not only dismissed or devalued but sometimes seen as a threat to language. The parents who spoke up about their concerns at meetings I attended or in meetings with Gwen, express a transatlantic understanding of normal language development as involving a movement away from the use of external objects and toward internally processed, independently produced speech acts. This is a culturally particular story shared by developmental specialists

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throughout the United Kingdom, the United States, and elsewhere. They tend to gauge the utility of communicative aids like PECS based on whether or not they will lead to full speech. As Ochs and Schieffelin point out, “every society has its own developmental stories that are rooted in social organization, beliefs, and values,” which may be “explicitly codified and/or tacitly assumed by members.”28 The developmental story I encountered in London and upstate New York assumes either linear progress or regression. Whereas most children are framed as “normal,” according to this story, our children are considered “behind” or “delayed.” “Two steps forward, three steps back,” as my old morning group members would sometimes say. With the advent of electronic tablets, what were once rather rudimentary folders covered with Velcro have become more elaborate and multifunctional. Among parents I have met, the anxieties concerning assistive technology did not go away when laminators were replaced with touchscreens. PECS is not simply a way of reshaping behavior, however. It is meant to draw unusual language learners into the sociality of interaction through their attentiveness to its material forms, the binder, the symbols, the motivators. Some studies examining the effectiveness of PECS find marked improvement in speech production, while others do not, but even the latter still find evidence of an improved ability to use PECS.29 In these cases, it may still extend communication skills by offering a practical model for how social interaction works and new resources to generate innovative sign systems around that, as Charlie did. As Jeanne puts it, PECS provides Charlie with his own “economy” of objects, premised on a model of sociality as exchange. This characterization of the practice is quite fitting, because there are times still today when he seems to act as if he owes us a debt for providing him with something, and he reaches out to exchange the nearest thing at hand. PECS is a distant memory, but we still find small objects on refrigerator shelves, kitchen counters, near bathroom sinks that don’t belong there, and other things suspiciously missing. Charlie’s inconsistent and technically “stunted” use of PECS became part of his distinctive semiotic repertoire of expression, gesture, and phonation to communicate with his family, friends, and carers, his home signing. As Charles Goodwin explains, the success of (what I would call) home sign gestures relies on their being placed in the correct sequence and context of interaction—­a request to watch a video should not be confused with a request to go outside.30 But that goes both ways; Charlie needs to understand us sometimes, too. If evaluated relative to the achievement of “real” speech, this range of communicative forms can appear quite limited, which can create the kinds of anxiety and uncertainty documented in the morning school meeting. It is precisely due to such boundary anxieties, about where speaking subjects end

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and begin, that PECS, speech-­generating devices, and other linguistic equipment for the nonverbal remain controversial. Consider the colloquial term for a learner’s PECS book among practitioners: their “voice.” As one PECS trainer informed me, this is meant to socialize caregivers into a new conception of language habilitation, to remind them not to restrict the learner’s access to the book and inadvertently suppress their communicative agency: “I keep telling them that is his voice, don’t put it on the shelf out of reach!” Such reminders are a response to the parents’ resistance to the notion that their child’s “inner” voice is dependent upon disembodied equipment. The difficulty of PECS “voices” is that they threaten to become indistinguishable from their equipment. Other alternative communication devices are similarly controversial, not only because of the role of mediating devices but because of full-­fledged linguistic actors manipulating them (see chapter 4).

Clever Hands Thorndike’s “law of effect” flattened differences between minds, not only that of teacher and learner, but between any kind of being. This avoided the glottocentrism that otherwise shaped psychological approaches to the mind, especially psychoanalysis. As psychologist and animal behaviorist Douglas Candland put it: When Thorndike decided to ignore the assumed presumptions and concentrate on the motor behavior of animals, to study the action itself and not the perception on which it is presumably based, he was setting forth a new view of how to study the mind . . . If his technique were a sound one, it would not have the drawbacks of psychoanalysis, since it would not depend on language and it would extend the study of the mind to all sentient beings, not merely those who speak in a language that we human beings presume to understand.31

If ignoring language was one possible benefit of Thorndike’s approach, it was not long before it was seen as the key to teaching it to those naturally without it, like nonhuman animals.32 The idea that language is only on the side of humans took a hit with biological theories in the nineteenth century. As artist and author Austin McQuinn puts it: “after Charles Darwin’s radical declarations of species evolution, maintaining the status of human exceptionalism became more difficult. Pushing back against scientific and religious insistence on difference, writers and artists began to question notions of species, now newly

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troubled by the enigmatic presence of apes.”33 By the late twentieth century, different ape researchers—­mostly but not exclusively women—­were extending the critique of human exceptionalism by attempting to train great apes in captivity to talk. In this section I compare recent attempts to help apes speak, and the controversy it created, to what I have said about human-­related work on PECS. This is not an obvious comparison. If anything, critics of PECS could say it involves human exceptionalism (though I am not aware of any who have).34 It may be that people who work with with nonspeaking apes are operating from the opposite conviction—­that humans are not so very different from our primate cousins. Yet, comparing language instruction as it is structured in practice yields interesting similarities. As explained in the previous section, PECS is thought by some language trainers to work (or at least work better than most alternatives) because it does not rely on symbolism. Instead, it is meant to create a link between word and object. Without symbolism, the only option left is to incorporate associations made through contact and contrast. Sue Savage-­Rumbaugh makes this clear in a review in some of the less successful chimpanzee signing she observed early in her career: “words seemed to lack an existence apart from the context of asking human beings to carry out simple actions such as tickling, transferring food, etc. Their language was a one-­way goods-­and-­services affair. It was difficult to discern whether this limitation lay in them, the way in which they were being taught, their histories, or their current environment.”35 In this sense, and this alone, PECS is similar to forms of language training used for captive apes. In order to spark symbolic capacity, both have no choice but to start with a direct act of exchange, one that is meant to evoke a link between the uttered word and the desired object, just as the exchange itself is meant to evoke a connection between personal enjoyment and successful social interaction. At the same time, the mediation of “proof of language” through objects and others inevitably raises suspicions. This makes it hard for many scholars to believe that apes can truly speak, since it can always be argued that other fluent people (their “teachers”) are actually speaking through them—­as if the apes were primate puppets. A complement to the growth of AI research during the Cold War—­and linked to it in the popular imagination—­was the flurry of interest in primatology involving experiments with trans-­species communication and sociality, both in the lab and in the wild. The reason such accounts became so attractive in the late twentieth century, Haraway argues, is that at a time when anxieties were growing about the denaturalization of humankind and the destruction of nature, primatology offered redemptive narratives that placed “animals just at or over the line into ‘culture’” and people “at or over the line into ‘nature.’”36

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In her more recent writing, Haraway steps back some of her criticism of the feminist scientists who were doing some of this pathbreaking ape research. One contribution from their work was to challenge the speciesist tendencies to see nonhuman primates as pure animals driven by instinct and natural signal use (for instance, using smell to detect danger or grooming to build social bonds). Rather than keep Agamben’s anthropological machine running, in other words, these scientists helped sabotage it by showing how apes could become more human-­like with the appropriate training. Closely related to humans genetically, chimpanzees, gorillas, and orangutans seem to possess some of the same basic social skills that humans have. That has led many people to speculate why it is, then, that apes do not talk. The simplest explanation is that they lack the brains and bodies to produce complex vocalizations, learn and remember subtle linguistic rules, and achieve symbolic understanding. Of course, it could also be said that apes in the wild do not have people using language around them at the critical age when they might learn linguistic skills. More to the point, what appears from the perspective of an idealized anthropocentric model of communicative competence as biological limitation could also be seen as affordances for alternative forms of sign use. Two of the most accomplished and well-­known “speaking” apes are Koko the gorilla and Kanzi the bonobo chimpanzee. (I will discuss Koko more in the next chapter.) Both had been trained to use signs through behavioral conditioning methods, including positive reinforcement most especially. The benefit of this method is that it allows teachers to ignore the black box of the animal subject, its supposed “internal” deficits, and instead break down semiotic practice into observable and manipulable patterns of stimulus and response. As a result, these simians can be considered “species of cyborg, whose communication modalities can be translated and re-­ synthesized to cross species and machine-­organism barriers.”37 Fantasies of speaking with animals are millennia old. Even so, they are not typically motivated by the same desperation and hope that lies behind attempts to communicate with nonverbal persons. Yet both are vulnerable to broadly similar semiotic complications and uncertainties. In a recurring theme across many studies, there is a tendency for scientists working with (sometimes disabled) animals to reference disabled or ancestral humans and vice versa. Savage-­Rumbaugh makes this clear in one of the first published accounts of Kanzi: One of the recurrent problems in teaching language to mentally retarded individuals is their lack of ability to use the symbols they learn outside of the instructional setting . . . One would expect that if symbols have

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acquired true communicative value for the user, they would become generalized, and used in many contexts.38

Kanzi’s communication would involve PECS-­like devices. Inspired by other signing experiments, Savage-­Rumbaugh and colleagues (1980) designed a training method with chimpanzees using “lexigrams”: small rectangular signs with no inherent connection to their object of reference. These were mounted inside cages so that subjects would have access to them on a regular basis for use in chimp–­chimp communication. Using operant conditioning, once again, researchers attempted to teach common chimps to use signs not only individually, but also in combination in order to approximate symbolic reference.39 The researchers would begin by teaching the chimps to pair lexigrams to represent particular foods, tools, and actions, which were ultimately structured to elicit an understanding of categorical distinctions of a more abstract sort between “tools,” “foods,” and so on. The initial efforts had mixed success but, in a now famous accident, an immature bonobo named Kanzi, who had witnessed his adoptive mother’s language trials, showed an amazing aptitude for lexigram use and was able to achieve levels of symbolic communication his predecessors could not manage.40 Michael Tomasello explains the different context that made possible Kanzi’s success when compared to other captive apes: “whereas the earlier chimpanzee students were “trained” to do certain things in certain situations, Kanzi was not trained at all. Rather, he was raised more naturally in a human-­like cultural environment in which he was regularly included in highly structured cultural activities.”41 Put differently, and in stark contrast to carefully orchestrated trials involving PECS usage, Kanzi’s habilitation was implicit rather than explicit and social more than technical. According to the Great Ape Trust, Kanzi could eventually recognize more than five hundred words, including (like Koko) many spoken words of English. More than that, Kanzi showed facility with conceptual distinctions between types of categories that demonstrate more continuity with the symbolic depth of human languages. At the same time, Kanzi’s communication is technical in the sense of being mediated through objects, the lexigrams. An early critique of Savage-­ Rumbaugh and associates, echoing those leveled against Patterson (see chapter 4), suggested that Kanzi was only conditioned to use the lexigrams, which were serving as indexes that referred to past rewards and, thus, were not “true” symbols.42 This skepticism was also driven by a familiarity with the syntactic explosion that occurs in the early years of most (but not all) human children. After three years of age, in particular, neurotypical children seem to “naturally” become more adept at combining individual words into

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various utterances, something that no observed chimps have been shown to do. Just as ape language skeptics can use this naturally speaking figure as sufficient reason to question the true communicative competence of chimps like Kanzi, ape language researchers can fault this same assumption as the source of anthropocentric bias that dismisses, a priori, any nonhuman communication as nothing but a less-­evolved protolanguage. If I am honest, I don’t want ape language experiments to succeed, or to have succeeded. Part of me loathes the notion that a nonhuman primate could develop capacities for symbolic communication that Charlie has not clearly acquired and may never acquire. And yet, I  also hate it when people dismiss it when chimps, gorillas, or any animal make gestures or manipulate signs that resemble how Charlie communicates as not good enough, because that means his are not either. It is just as bad when the things Charlie does to speak are regarded as a novelty, a joke, a carnival trick because animals also do them. So I am torn. I want the possibility of ape semiotic agency respected for Charlie’s sake, but I also selfishly want ape language abilities to remain no greater than those of my son. Is there a choice between the twin extremes of oppressively dehumanizing and inappropriately humanizing?

For skeptics, the experimental equipment involved in ape language research, the reward-­based learning, the human trainers, the lexigrams, are not genuine demonstrations of competence but merely “cognitive props” that serve as reminders that these linguistic skills are experimentally conditioned and conditional.43 For them, this makes the animal subject seem like the prosthesis of the scientist, not an expressive being. When Savage-­Rumbaugh and others defend their research, they must negotiate a tension between a standardized experimental protocol and the peculiar, accidental history of Kanzi’s linguistic achievements, including his alternative biological resources as a bonobo chimp. Kanzi happened upon lexigram training while his adoptive mother, Matata, was participating in experiments intended for her alone. From the language teacher’s point of view, he interfered in her training: So Kanzi attended the language instruction sessions, but was never intentionally taught by his caregivers. During the sessions, Kanzi was a great nuisance. He would grab objects from whomever, steal food from Matata, jump from above on Matata’s head and into her lap, and so on. Still, he did not deny Matata all chance to learn.

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Although he was not included in the training, being regarded as too young, he was sometimes fascinated by the lexigrams, and would try to catch them as they lit up when their keys were pressed. By the time he was 14 months old, he occasionally pressed keys and then ran to the vending machine, having apparently made the connection between key presses and the delivery of food. At this time, however, he gave no sign of understanding that a specific key was related to a particular food. When he was 24 months old, a favorite key became CHASE; he would press it and look over his shoulder for the result, hoping that the experimenter would agree to chase him.44

The serendipity of this event—­the singular conditions and situated relationships that led to Kanzi’s lexigram use—­makes it unique and also makes it hard to replicate in other apes or to label as incontrovertible evidence of a symbolic capacity, of human language spoken by a nonhuman animal. Savage-­Rumbaugh and colleagues have made clear that this was idiosyncractic and innovative, in fact, a home sign. Kanzi’s learning to that point had been completely spontaneous. He had received no training, but had simply observed Matata’s training. Nevertheless, he not only learned something about lexigrams, but also invented iconic gestures, for example, extending his arm in the direction of a desired direction of travel, and making a twisting motion with his hands to indicate that he wanted a jar opened. He also indicated that he wanted a person to give him an object by gesturing first at the object, and then at the person, much as a human child does.45

Despite the analogies drawn between Kanzi and human children, his inventive home signing does not provide final proof of symbolic language in these moments, precisely because what Kanzi has to say is so wedded to specific situations, individuals, and motivating things. But that is okay. After all, in most accounts of the linguistic feats of Kanzi (and. as I will explain in the next chapter, Koko the gorilla), scientists are not endeavoring to hybridize new great ape societies composed of home-­signing humans, gorillas, and chimps. The goal is not to bring them out of captivity and into a world we share. Rather, the goal is to use experiments with nonhuman talk to make claims about “the human,” including the pain and longing that is thought to accompany self-­understanding. In this sense, at least, ape language programs cannot really fail, even if the participants are, in the end, caricatured as primate puppets. Whether their successes are celebrated or dismissed, they generate popular narratives of

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human distinction and limitation—­truly great apes that only remind us of how terribly ordinary most other animals appear by comparison. My simple, somewhat obvious point is that this public debate is only possible if gorillas, chimps, and people can stand to be together in the same room for extended periods of time. This can only happen if they find ways to communicate other than through force signs, as Kanzi did by starting with CHASE and moving on to opening jars. That is no small feat, given the obvious force involved to keep animals in captivity in the first place. But it is not the same thing as saying that language was involved, that the apes did speak or that they understood what was being said to them. Appreciating the delicate home signs in these relationships, their fleeting fragility, could be, should be enough for us, though it never is.

Hoax Signing Obviously, Chris did not comply with culturally prescribed courses of rational activity. Yet in a more generic human sense, she seemed to conduct herself quite rationally. Perhaps she could not give her hedonistic pursuits names like “self-­realization,” “the pursuit of personal power,” or “transcendence,” but that she was a pleasure-­seeking, world-­mastering person made her quite understandable to me. In this enterprise we were in basic agreement. We just used different technologies to accomplish our goals.46

In this quotation from David Goode’s ethnography of a care facility in California, he distinguishes cognitively disabled from neurotypical people not by whether they are able to do things, but rather by the means they use. For Goode, we all use technologies to engage in “pleasure seeking” and “world mastering,” and that is no different for those he terms alingual. I shall follow his lead and consider how home signing can involve mediation through external equipment, devices, artifacts that help transfer messages between people. When such mediation is associated with disabled and/or nonhuman communication, however, it can create a sense of anxiety and uncertainty about who is speaking and how. Ideologies of language are potentially exposed whenever improvisational and idiosyncratic home signs are involved, but especially when they are mediated by devices. Linguistic anthropologist Erika Hoffman-­Dilloway describes very different presuppositions about language that mediate perceptions of the linguistic competence of Nepali home signers as they enter school.47 These do not seem to rest on the same anxieties over internal or

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prosthetic linguistic equipment as those of the examples under consideration here. At the same time, some similarities are worth noting. People diagnosed on the autism spectrum experience a similar social withdrawal and are also exposed to resources for language development that they cannot access or that are not tailored to their needs.48 There are historical reasons for the similarity between ape and autism trials. Their formal semiotic resemblances stem from their mutual development out of Thorndike’s law of effect. That is, they depend on the identification of a stimulus and a stimulus-­response with a particular signal, so that a habit can develop that encourages the trainee to associate word and object. This process is mediated by the trainee’s individual drive to attain some motivating end, most commonly, food. PECS trainers regularly inform parents and carers new to the practice that food is the best motivator and the most likely to reward communication with the immediacy required for the subject to build associations between objects and symbols.49 One of the reasons that PECS has been preferred as a method for people diagnosed on the spectrum is that it does not require eye contact between the participants, only that the learner attends to the object being exchanged. Furthermore, it involves not imitation, per se, but rewarded, goal-­directed behavior learned through repetition and adherence to a step-­by-­step approach, Thorndike’s law of effect. Rather than begin by associating word and object, the learner first learns to exchange objects for desired “motivators” (a favorite snack, a game, and so on). PECS is thought to work by training learner and teacher to reduce their interactions to basic components. There are, however, innumerable ways of imagining scaled-­down semiosis. The behaviorist epistemology behind PECS insists on breaking interactions down into basic, reciprocal actions. The only word spoken is the name of the motivator; the only gesture is the delivery of the appropriate symbol. Acknowledging home signing in situations of controversial language instruction is meant as an alternative to exclusively evaluating such language habilitation—­whether involving people diagnosed with cognitive disabilities or captive apes—­in terms of whether it does or does not reliably lead to linguistic competence. On the one hand, judging unusual language learning in this way disavows the real work of semiotic innovation involved in care relationships, which happens behind the scenes to make experimentation and habilitation possible. On the other hand, such evaluation lends itself to what might be called hoax talk, a speech genre that scholars and others engage in to discredit those who are seen to falsely present “­breakthroughs” to the public. One stunning example is the debate over Facilitated Communication (FC), where an aide helps an otherwise nonverbal person to type messages

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by lifting their hand to a keyboard. This caught on in the United States in the early 1990s and has since been heavily criticized as a hoax perpetuated by the will of the nonverbal subject’s linguistically competent assistants.50 In the fall of 1998, I first encountered this counter-­narrative against FC as a college freshman at Cornell University. I was a psychology major, and in my first foray into the discipline, a vast “Psychology 101” lecture class with some thirteen hundred students each fall semester, we were shown a video that claimed to “debunk” FC as a hoax. It was meant to be useful as a lesson not about who speaks and how, but about how bias can influence experimental results. Importantly, these discussions left off recommending an alternative. Unlike Thorndike, their experimental ancestor, these psychologists seemed uninterested in how people might better learn to communicate. Or, put differently, they only cared about the lesson they were imparting to us college students. It was enough to propagate a smug and detached condescension masked as impartial scientific method. Foolish parents and caregivers so badly want to communicate with the “real person” locked inside disabled bodies, they are believed to bias the results of “treatment” out of desperate hope. I had a similar experience with psychologist hoax talk in the fall of 2012, when my wife and I sat down for a conference with a white, male senior psychologist for a chat about enrolling Charlie in his school. The operation, affiliated with my new employer, Binghamton University, specialized in ABA and children diagnosed on the spectrum. Trying to give the psychologist and “his” staff a sense of who Charlie was, we explained that even though he did not talk, Charlie liked making eye contact on occasion, which we saw as his expressing a desire to connect with us. The psychologist in charge flatly stated that it was far more likely Charlie was not looking at us, noting that this was against type, that people on the spectrum often have a problem with eye contact. No, he was likely only staring at his own reflection in our corneas: “I’ve known other children who did that,” he told us confidently. That was the first and only verbal interaction we had with that psychologist in the six years that our son attended “his” school. He chose to use it to debunk what he saw as our ignorant sense of connection we had with our son, to use his vaunted expertise to disabuse us of the wrongheaded notion that Charlie might actually want to hold our gaze. I still don’t know, even if true, what possible purpose this served in his mind. To tell us that and then never speak to us again. That said, I don’t

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think that psychologist really saw us or Charlie in that meeting at all. It seemed like he was looking at us, but we were merely reflections of his own greatness to admire.

This is yet another account of the naturally speaking subject, with their desire  to communicate so strong that they contaminate experimental encounters with unnatural language learners. The parents? The disabled individuals? They were of no account except as hapless fools duped by charlatans—­there but for the grace of inductive reasoning and the null hypothesis go we all! For critics, this is nothing but a hoax, a product of ordinary linguistic agents puppeteering or ventriloquizing through people and apes who, despite appearances, can’t really speak. And yet, during one discussion group at Charlie’s London school, the adult sibling of someone on the spectrum swore to us that the use of FC had allowed her brother, diagnosed with a cognitive disability, to communicate his inner thoughts for the first time. Also in London, Jeanne and I attended a premiere of Wretches and Jabberers, a 2010 documentary purporting to show two formerly nonverbal individuals on a tour meeting other FC-­adept people diagnosed on the spectrum. Even if Facilitated Communication examples involve ventriloquism—­ and personally I think the matter cannot be settled either way—­what skeptics often miss is that doing good ventriloquism is still extremely hard.51 In other words, even the appearance of linguistic prowess requires closely aligning or recruiting objects and beings in the creation of innovative and shared sign work, without which there would be nothing to “debunk.” Unable to recognize a distributed form of agency, as in the Nepali case examined by Hoffman-­Dilloway, some FC advocates have instead attempted to prove there exist levels of “hidden competence” in impaired individuals, including concealed forms of literacy. I do not think it is really possible, finally to defeat hoax talk with evidence, whether with FC, PECS, GSL, or lexigrams. It is possible to appreciate what impressive communication must happen in these situations, whether or not they amount to symbolic language. For PECS users, some of whom may carry a book of symbols with them their whole lives, questions of linguistic competence remain. In some ways, however, the attribution of participant roles—­knowing for sure “who is speaking”—­can never be taken for granted in a speech event.52 Speech devices may complicate, in their own ways, the figuration of a speaker, but the absence of external equipment does not take this out of consideration. The practical struggles of people diagnosed with cognitive and/or linguistic disabilities merely restage the path of all would-­be speakers. One could argue that it is the struggle for communication, not its naturalness, that

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makes people like Charlie so compelling, beyond mere fools to debunk. As Charles Goodwin writes, discussing a man with impaired speech following a stroke: “such a task, which mobilizes language, gesture and social organization for the accomplishment of action within consequential settings, sits at the very center of what it means to be human.”53 It is not so strange for the “voice” of PECS books to contain traces of the agency of others. Rather than a reflection of an incomplete or flawed subject, this could be understood as an invitation to others to recognize the distributed competence of the book’s owner, and to seek out and experiment with novel home-­signing exchanges to see what works. The delicacy of linguistic competencies belies normative definitions of the human. This form is especially acute when that impairment manifests linguistically and disabled persons appear to lack a recognized “voice” to speak on their own behalf. Just as the communicative limitations of infants and toddlers do not prevent them from contributing to participant interactions, however, so it is with people diagnosed with cognitive and/or linguistic disabilities. In his discussion of “ego-­affirming agency,” linguistic anthropologist Alessandro Duranti describes the minimal conditions within which the performance of agency through language can be recognized. At the most basic level: when we hear the sounds produced by an individual (or group) well enough to know that a language is being used but not distinctly enough to identify the words that are being uttered or even the specific language that is spoken . . . we grant the speaker the performance of a certain type of self-­assertion.54

This recognition goes beyond the mere co-­presence of a person, he argues; there is something distinct about linguistically mediated presence that asserts a kind of zero degree agency. The question that linguistic equipment raises is this: what are we are to make of signs we encounter that do not clearly constitute “a language”? In certain circumstances, technically mediated speech suggests communication that is both too sophisticated to be mere animal signaling and too mediated, too dependent on other people and objects, to affirm the ego of the communicator as do the sounds in an encounter with an alien language. One alternative is to recognize a form of semiotic agency, broader in the sense that it can encompass other forms of nonlinguistic communication and take seriously the contributions of impaired interlocutors to meaningful encounters. But this admittedly expands the capacity of communicative action potentially well beyond the human. I have argued that one productive way to explore staged moments of

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human/nonhuman encounter is to examine the problem of linguistic techne, of actors being equipped and equipping others to speak. As Latour writes, “no beings, not even humans, speak on their own, but always through something or someone else.”55 Jonathan Sterne offers a similar point, that “the demand to resolve it into an intending subject, in command of its own faculties, is one of the fundamental operations of the ideology of vocal ability” and yet there is a “contrived dimension of all voices . . . there is no voice except through attribution, through some form of reception.”56 Acknowledging that all human beings find speech through the mediation of linguistic prostheses is not to disregard the corporeal and cognitive resources that make human communication possible, impaired or otherwise, or that make nonhuman communication different. Rather, it is to recognize that even equipment such as this is not “naturally occurring,” insofar as claims of “naturalness” or “humanness” presuppose a dehistoricized and totalized body, always already fully human.57 Often, nonverbal children diagnosed with autism spectrum conditions begin to develop neurotypically ordinary speech, but gradually lose these words and “regress” into purely nonverbal toddlers. The idea that their rise to linguistic competence is socially or genetically assured is a harmful ­delusion.58 Our language is not some kind of independent organ, but part of a constantly changing “bodymind,” as critical disability theorist Sami Schalk puts it, dynamically growing in relation to the people and things that surround us and with which we are enmeshed.59 One reason that cybernetics and behaviorism have influenced those who seek to reshape linguistic capacities is that they provide models for simplifying and intervening in the learning processes (and hence the growth) of both nonhumans and humans. Linguistic equipment might be seen to extend or impugn the agency of various actors. This is mediated by prominent semiotic ideologies or background assumptions about what kinds of semiotic actors and actions are recognizable and admissible. Where humans are characterized as “naturally speaking,” questions of nonhuman/human characteristics gain more importance, and flirting with, demonstrating, and crossing this boundary become powerful performances. From another point of view, there could be no definitive “humanity” outside of staged encounters with the nonhumans that surround us, in constitutive relation to whom “the human” is technically revealed, made fleetingly apparent.60 So, for instance, “unnatural” language trials can be reframed (by skeptics) in such a way that they promote the idea of the exceptional language teacher, one so gifted that they perpetuate a hoax by speaking through an alingual puppet. Whether in the case of Koko’s and Kanzi’s world-­renowned human companions, or the parents and carers desperate

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to give expression to the “hidden” voices of people diagnosed with cognitive disabilities, those responsible for controlling home sign equipment often seem to overshadow their impaired interlocutors, who become mere extensions of another’s communicative will. In these cases, home signs are overmined, as if they were swallowed up by other forms of meaningful communication. I can imagine skeptics of Charlie’s home signing, for instance, claiming that all of his supposed communication is only some fetish that Jeanne and I dream up, nothing but an aftereffect of our “real” dialogue with each other. His own agency in these interactions is lost, and he becomes nothing but a mere puppet or patsy. In an article that makes arguments related to mine in this chapter, Rutherford simultaneously reflects on experiences with her own daughter, Millie, and responds to cultural resistance to assistive communication in the United States: The lives of disabled people, and the livelihoods of those who make a living as their allies, depend on our willingness to challenge those who refuse to acknowledge the agency of people like Millie. And yet my relationship with Milie has alerted me to questions bearing on the ethics of communication that the debate over authenticity leaves out.61

Alternative communication methods do not demand that we trade intellectual curiosity for unwavering acceptance of any and all claims of communicative competence. Far from it—­taking these modes of communication seriously, as something other than a sophisticated hoax, reveals more interesting questions than “who is really speaking?” Critics of Savage-­Rumbaugh and other ape language researchers have likened nonhuman sign language to a form of Clever Hans trickery, where experimenter bias and the domestication of animal interlocutors distort the results.62 In short, they are accused of making assumptions about semiotic competence that may not be there. But, as Janni Pedersen has recently argued with respect to ape language, all dialogue with others through signs involves making assumptions about their intentions.63 Put differently, for anyone to communicate, in practice, about anything, someone else has to recognize them as having something they are trying to say, as Duranti says of aliens. If a person screams for help in the woods and no one is there to hear them (not even any animals lurking nearby), then they might make a lot of noise, but for all intents and purposes they haven’t communicated anything. They might as well be mute. All this tells us is something we already intuitively know: communication is fundamentally interactive or it is nothing. All signification, not only home signs, is therefore distributed, shared, social. We are all each other’s semiotic prostheses.

[ C h a pt er Fou r ]

Significant Others

Going for long drives is easier now than it used to be, with Charlie, largely because we can anticipate what he will need in order to relax and tolerate hours and hours on the road. We know about how often to stop and use the restroom or offer him snacks. We know to have an extra iPad ready in case he wears out the one he is using. It still can get rough, on occasion. We are within physical reach, which can be difficult or downright dangerous if he wants to make contact to communicate something. It is mid-­June 2022, and we are driving back from visiting my sister in Pittsburgh for her daughter’s high school graduation. Jeanne and I are both really pleased and smile as we reflect on the trip. Charlie did really well, both at their home, in the hotel room we booked, and on the monotonous, six-­hour drive. Jeanne drove most of the way there and back, partly because she is accustomed to long commutes for work, but partly also so I can have free hands to observe, to fulfill and possibly to redirect any of Charlie’s expressed needs as we travel. I am on the passenger side of the front of our SUV, but spend a lot of time turning back to monitor him for any signs of distress. The longer this goes on, the more my neck and lower back start to ache. It is hard, because I want to read the books I’ve brought along. When I  am in a good mood, I am more likely to have an active mind, to seek out conversations or to turn over new ideas in my head. But periodically my intellectual revelry is interrupted as Charlie shoves his right foot onto the armrest/cup holder between the two front seats. His expectation is that someone up there will give him a foot rub. I instantly offer to do so, reaching down my left hand to tightly press my fingers against the sock-­covered heel, arch, instep, and ball of his foot. But he occasionally will rebuke my attempts. He’ll brush my hand aside and nudge his mother, who is focused on the road, with the 115

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insistent foot, trying to coax her to take a hand off the steering wheel and attend to him instead, to drive one-­handed, grabbing at his foot as if she were using a stick shift to change gears. This is not ideal, we tell Charlie, she needs to drive. But that does not always satisfy him, and he may not understand at all: we are so close to one another, why can’t we touch?

Intensive home signing can pose a challenge when you are not sure what someone means or whether they mean anything at all. But it is no less a challenge when home signs are understood and established. Nevertheless, what makes these drives go smoothly now is a shared sense of one another, trapped together in proximity: Jeanne, Charlie, and me. In this chapter I am interested in delving more into the home signs of significant others. Specifically, I highlight the closeness, or sympathy, that tends to form between people who share a home or, more precisely, a caregiving relationship. In many cases, though not always, this can lead to shared senses of positive affect. I begin by describing how sympathy and home signs can go together, allowing for familiarity that lends playfulness and parody to home-­signing exchanges, in the form of in-­jokes. I then consider situations where, for different reasons, home signing and sympathy are at odds. In the first such situation, caregivers for persons diagnosed with cognitive and linguistic disabilities describe how certain contexts of care encourage anticipating the needs of individuals. This can mean an emphasis on reading signs that they may not intend to communicate, or that they express unconsciously (as when a growl in someone’s belly communicates, perhaps against their will, a bodily need for food). In the second situation, I return to ape language experiments and discuss controversy where intensive home signing generates feelings of antipathy and allegations of abuse. I focus in particular on Koko the gorilla and controversies surrounding her communication and care. While very different, these examples share a focus on significant othering as a process that can take the form of top-­down, institutional discipline as well as that of a spontaneous social emergence, as I have characterized it in other chapters. Doing home signs clearly means being close, in two senses. You have to be close by in many cases (see chapter 2), though that does not mean physical contact is absolutely necessary, as communication can be done through material intermediaries (see chapter 3). But home signing also often means being close in the sense of having a deep and meaningful relationship with someone. This can make nonlinguistic signs serve as immanent natural signs, in E. Mara Green’s sense of the term, meaning that they can serve to communicate meaning even in the absence of conventionalization.1 If some

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signs are more immanent due to, for instance, direct contact in physical space between sign and object (this is how pointing works, for instance, which Charlie does typically understand), others are more immanent because of how Charlie and his familiar carers understand one another. I routinely think, and have occasionally said to people, that I know Charlie better than I know anyone I have ever met and certainly better than anyone knows me. When I say this, I am normally trying to explain just how intense and intensive our relationship is on a daily basis. In the mid-­twentieth century, psychologist Harry Stack Sullivan tried to popularize the importance of close personal relationships for development with the term “significant other.” He succeeded in spreading his ideas, more than most scholars, but not in the way he intended. Since the term was first introduced to a wide audience in his book The Interpersonal Theory of Psychiatry in 1953, it has come to mean only those people with whom we have romantic relationships (more or less equivalent to “romantic partner” today).2 Sullivan was unique in the history of psychiatry for blending Freudian theories with the American pragmatic tradition associated with Peirce, James, and Mead.3 For Sullivan, significant others were less like Oedipal archetypes—­the father, the mother—­and more the real, flesh-­ and-­blood others with whom we mutually relate and, in so doing, become at once social and individual beings. In keeping with radical empiricism, Sullivan was less interested in reflecting abstractly on the Freudian unconscious as a hidden and inaccessible domain, and more concerned with creating opportunities for people to work through their experiences and conceptions of the other people in their actual lives.4 Sullivan explores the importance of significant others early in his book, mentioning them specifically in order to characterize the relationships people form with alingual infants. Infants are interesting for many psychologists and linguists because of how different they appear to be from the human they might later become. With infants, the exploration of others as others happens at the very same time that one is understanding oneself as a self. Drawing on Melanie Klein, among other scholars, Sullivan offered the following example: A classical instance is disturbance of feeding; but all the performances of the infant are equally vulnerable to being arrested or impeded, in direct chronological and otherwise specific relationship to the emotional disturbance of the significant other person. I cannot tell you what anxiety feels like to the infant . . . Almost anybody watching the infant during these upsets would agree that it didn’t seem to be fun; the infant didn’t enjoy it.5

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Sullivan’s infant can have thoughts and feelings that are hard to interpret, but that is less important, and it is hard to know for sure empirically, anyhow. What is evident from the most basic observation, however, is that “he” is relating to others who directly impact “his” moods. Attending to the other side of home signs means recognizing that the significant others in our lives, including but not limited to those who raise us or whom we are raising, are also signifying others. Put differently, just as we develop singular relationships with certain people, those with whom we spend a great deal of time, so too do we all develop singular styles of communication over time. But, as Sullivan described, closeness can also get in the way of communication and growth; they do not always work together. One clear, albeit seemingly benign example of sympathy comes from what people close to one another find funny (what is normally described as in-­jokes), a “you had to be there” kind of comedy that depends on mutual feeling and orientation to phenomena that is in some sense outside what can be communicated with words. In-­jokes often depend on contact in space, on proximity, as does sympathy. This aligns with the views of Danilyn Rutherford, for whom sympathy “does some of the same work as terms like recognition or identification” and “encompasses empathy, pity, and compassion, but . . . can spawn hostility as easily as love.”6 Rutherford continues: I have in mind something more visceral and immediate, a feeling that springs from and shapes unfolding interactions. For Hume, sympathy registers a gradient of feeling and moral obligation, a sense of two subject positions and the interests associated with them being more or less tightly aligned. The vividness of one’s commitments depends on whether the people and outcomes involved are experienced as close or remote, relatively accessible or not.7

While it does not come up directly in her argument in that paper (which is about empire and state-­building in New Guinea), I think that one of the reasons this materialist conception of sympathy struck Rutherford as worth building upon is that she too is an anthropologist raising a largely alingual child. She knows all too well how and why sympathy matters, that the ­“vividness of one’s commitments” can be experienced as painful and oppressive. For one thing, sympathy is not expected of everyone in equal measure.8 There is a basic paradox at work here, then. On the one hand, sympathy is needed to develop successful home sign relations, since you need to attend closely to one another’s cues in order to figure them out. On the other hand, too much sympathy can render the need for communication moot since you can anticipate what other people want before they ask for it or perhaps

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even know it themselves. The latter circumstance is especially problematic if the goal is to develop new and unexpected forms of connection, to avoid becoming too attached to what Sullivan called “unformulated experience” by giving significant others new chances to become signifying others.

In-­Jokes However spontaneous it seems, laughter always implies a kind of secret freemasonry, or even complicity, with other laughers, real or imaginary. Henri Bergson9

Most of our interactions with Charlie come in one of two forms. The first is a set of home signs loosely held together by the shared activity or task they involve, such as using the restroom, going swimming, or heading out for a walk. The unspoken dialogue that ensues usually lasts as long as the activity does. Examples include the pinches described in chapter 1 or forms of play like tickling in chapter 2. The second kind of interaction is both more ephemeral and less situation-­dependent. It involves a brief exchange of information, a simple request or a display of affection, which only lasts long enough to achieve some relatively straightforward goal. An example of this would be the sharp “slap” I explained in the introduction, which Charlie produces in order to get our attention. Just as I finished writing that last sentence, Charlie delivers a single slap to the right arm of his favorite chair and looks directly at me, expressionless. The green fabric on both arms is worn and almost scaly to the touch, a result of being used as both a drum and a makeshift napkin over the years. The chair is typically his preferred means of deploying this basic home sign, which he developed independently at some point in 2020, at the age of fourteen. After he succeeds, and the slap draws us over to him, he might ask for all sorts of things. On this occasion he wants me to rub and pull on his right ear and then massage his arm a bit. This only lasts for a few minutes, at which time he gets up to eat. I hurry back to my laptop on the kitchen counter to write this, feeling the usual rush I get while writing, like I’m onto something. I need to write this fast, I think, before he slaps the chair again.

Charlie’s slaps are used to interrupt whatever we are doing when it doesn’t involve him. We aren’t always sure he knows what he wants from us when he does this, but the main purpose the slap achieves is attracting our attention,

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ensuring that we are focused on him and ready for an exchange of more home signs. More and more he does the same thing with his voice, slapping the air by abruptly yelping, “Bah!” Both could be said to mean something like “time to communicate!” It is not all that different from shared kinesic codes that many people Charlie’s age learn in the United States in order to get attention from adults—­raising their hand to be called on in class, for example. The difference is that, near as we can tell, Charlie’s slap is entirely his own invention.10 Charlie’s iconic slap is so commonplace now that it is even ripe for parody. A family in-­joke we’ve had for years is that “daddy” (that is, me) is stubborn and bossy, and insists on things like sitting on the toilet, getting up in the morning, or cleaning up messes (see chapter 5). As part of this social persona (and sometimes it does feel like I’m playing a part), I have developed my own, parallel home sign, consisting of a snap. I hold my left hand aloft, the rest of my body very still, and deliver one loud snap in my usual, unusual way of using my thumb to strike my forefinger against my middle finger. To us the snap means, more or less, “Charlie, attend to me and do as I ask.” It is more or less a version of Charlie’s slap, though, now that I think about it, I do not know which of us started doing this first, who is the imitator and who the inventor. With home signs it doesn’t really matter, so long as we know what it means. But on one occasion, months ago now, I got caught up in my social persona of “mean Daddy.” After he slapped the side of the chair, I suddenly snapped right back at him. I am not sure what I was hoping to accomplish by snapping in that instance, rather than doing what we normally do, which is immediately move close to him (within his signifying reach) to ascertain what he wants. What happened was something like this: I raise my left arm in his direction, the rest of me standing straight and still, and loudly snap my fingers once. (Meaning ≈ it is time to use the toilet/get up)11 Charlie stares back and firmly slaps the right side of his chair as if swatting a bug. (M ≈ no/do as I say/come to me) “No,” I respond, and I snap again. (M ≈ no/do as I say/get up) He smiles wide and slaps again, with more force. (M ≈ no/do as I say/come to me) I smile back in response and, rather than snap, this time I slap my side as hard as he just did, as if in imitation. (M ≈ I am imitating your “no/do as I say/come to me”)

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He slaps, still smiling. I slap, also still smiling. We both slap, one after another, in quick succession, both of us laughing now. (M ≈ ???)

The slap and the snap are both potential instances of sign types based on contrast and contact. When Charlie hears the snap, when we hear the slap, a sudden interruption of that sharp sound is directly connected with a more or less “proportional” change in the interaction. That is so because the underlying parameter that the snap, slap, and interaction share is a shift from absence to presence—­I’m with him/he’s with me, or we’re not. Both slap and snap are loud and carry far enough for the other to hear. Both are sufficiently distinct from other sounds that surround us in our apartment. If I was closer to him, I would not need to snap, I would just say “toilet” or even directly hand him an extra pull-­up to convey my intention (what we were taught to call an “object of reference” when we lived in England). If he was closer to me, he might not do the slap, but instead firmly but carefully press my shoulder or face, to reorient my body position away from him. That is another home sign for “no” or, more precisely, for “not what you want right now” that he developed.12 Perhaps the leading method in semiotics today is to classify signs into signifying vehicle types (icon, index, symbol) in a Peircean fashion. When scholars do this, it is meant to demonstrate their systematicity, to lend clarity to analysis, and to connect speech acts with real social events and outcomes. William James and Lady Victoria Welby-­Gregory, both interlocutors of Peirce, long ago noted what his logical-­deductive approach cannot do as well, which is to explain novelty, uncertainty, the unique and ineffable experience of a singular person or moment. That “M ≈ ???” in other words. When your emphasis is on logically coherent systems, to be fair, that is not the goal. Peirce recognized that information and ideas might ordinarily travel irregularly from mind to mind (or within the same mind). But, as a Kantian-­inspired logician, his starting point was instead how thought must occur in what he sometimes called a quasi-­mind, not how it worked in or between actual individual minds.13 The idea that interpreters might struggle to understand one another, let alone that they might not recognize one another as communicating at all, was of no account.14 Put differently, a Peircean-­inspired reclassification of the encounter related here would likely remain the same in the slap-­and-­snap exchange

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whether or not Charlie and I laughed. In some ways, what I am trying to do in this chapter hinges on the difference that that laughter makes to home signing. What Charlie and I engaged in could be considered an “in-­joke.” In English that means something idiosyncratic, a goof that only a few people are meant to find funny. You are either in on it or you are not. For this reason, in-­jokes are common expressions of sympathy among family, friends, partners, or co-­workers precisely because they are not meant to be shared widely, with people beyond those circles of significant others, in Sullivan’s sense. As Davies writes, “jokers who spontaneously co-­construct episodes of humor are demonstrating how thoroughly attuned they are in that moment to each other.”15 Davies might as well have said “sympathy” instead of “attunement” here. The former has the virtue of implying relationships of mutual feeling between persons, giving it a more distinctly ethical dimension (see chapter 5). We cannot really know what Charlie found funny in the first instance. Was it funny because he saw me imitating him, and our roles had reversed? because he successfully refused and challenged my parental authority? because “daddy” did not respond as expected when he did so (that is, with annoyance or insistence that he obey)? because the slap/snap sounds were so similar, even though I was using my body, not the chair? Is this gestural irony through parallelism?16 One of the difficulties with home signs of the sort we use with Charlie in our daily lives is that their meaning is often open-­ended and sometimes altogether unclear. I could gloss what one of us “means” in each instance: my snap in the air is roughly equivalent to (or ≈) “get up, it’s time to use the toilet,” while his slap approximately means “no, do as I say, come to me.” But these are loose and imperfect translations of our signing as forms of social acting and relating. Charlie and I know more or less how to affect or motivate one another with these signs, including how to annoy or amuse, which sometimes means we break into laughter. Perhaps this is what Agamben meant when he called gestures “not the sphere of an end in itself but rather the sphere of a pure and endless mediality”17—­Charlie and I seem to be delighting in the very means of communication, not what they are for, their ends. Gesture, in this specific home-­signing sense, is not “for” anything or anyone, other than to disclose mutual dependency on signs.18 What better response is there to that than laughter? What we can know is with whom Charlie found humor. In addition to being relatively improvisational and idiosyncratic, home signs are thoroughly relational; as the name suggests, they rely on a shared micro-­world where interlocutors can grow familiar with one another over time. If we cannot know for sure why Charlie laughs, we can know that sympathetic

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knowledge makes home signing possible and also is what home signing sustains. Charlie’s family members and carers have some intuitive sense of how he feels, how to make him feel, and he apparently intuits about us in similar ways. My parody of Charlie’s slap made us all laugh, I think, because we share some sense of one another. It is unclear that my “slap” signified all of that, in a symbolic way, but it might have successfully indicated and imitated while still remaining below the threshold of full-­fledged symbolism. For the slap and snap to approximate what allegedly happens in formal human language, we would need to answer unanswerable questions about whether Charlie understands these home signs to be signs and whether, by extension, he can grasp the inner workings of other minds and his own by means of such semiotic reflexivity (see chapter 3). Some, though not all, prominent linguists, philosophers, psychologists, cognitive scientists, and anthropologists agree that what makes symbolic language and thought distinct is that they involve some awareness of signs as signs. That level of reflexivity is simpler to observe with formal languages, since it is a component of all to some degree in the form of metalanguage, as when a person asks, “what does that mean?” This is something I can never ask Charlie and expect a response, though this does not mean he is incapable of reflecting in this way. Put simply, there is no dictionary to consult, on the shelf or in our heads, for the denotational meaning of “snap” or “slap,” no established set of conventions to stitch these homespun signifiers to signifieds. Another way that people demonstrate the reflexive power of language is through jokes, word games, puns, and the like. But considering signs as signs can also come up in ethical debates about how best to care for and relate to human and nonhuman beings with communicative difficulties. This is, broadly speaking, the domain of haptic sociality as described by Goodwin and Cekaite.19 Their research focuses, among other things, on what they call the “mundane creativity” of home lives. Caring, for them, is “bidirectional” and does not only flow from one person to another (as it sometimes does, painfully and under pressure).20 Goodwin and Cekaite make clear that significant others are those with whom we mutually share information about how we feel and what we mean to each other. In this way significant others make something together, but this something is unexpected and potentially unwieldy. It can be funny, but also unnerving. Building on these insights, I consider home signs as always potentially involving the creative capacity to affect others too much, for instance, making them laugh and laugh uncontrollably, even uncomfortably. This points our attention toward the anarchic spirit of home-­signing situations, their capacity to move us to action, as assuredly as an abrupt slap to the side of an old chair. This does not and cannot demand that we assess exactly how

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symbolic, language-­like, and reflexive home signing is, but it does say something about the importance of being co-­present for encounters with people you care for and about. Sometimes if something isn’t funny, the person telling the joke is not to blame. You needed to be there. Or, to slightly modify this oft-­repeated phrase, really, you needed to be there with us.

Worlds of Care Work But then, to live with the other person, even for a while, gives rise to a different kind of understanding, one which suspends the sense of separateness between self and other and evokes the primordial meaning of knowledge as a mode of being-­together-­with. Michael Jackson21

Having sympathy with another is not always, or maybe ever, automatic. It takes time and space together to feel you know another person and they know you. As a result, developing sympathy can also take the form of a demand. It can be something you must do to take care of another or be taken care of. Like Charlie extending his foot to his mother while she drives, it can be refused or resisted, obeyed and acquiesced to. In other situations, when we have new carers or well-­meaning family members and friends who want to form close relationships with Charlie, the sympathy we have for one another may be admired, hoped for, yet seemingly unattainable. All these perspectives on sympathy and more came up when I talked to professional caregivers. In some cases, the demand to form sympathy seems to exist as something of an institutional mandate. In that sense it is the very labor they are paid to provide. Central here, often but not always, is the requirement to learn and use home signs effectively and efficiently, to gain sympathetic understanding of people who may have communicative difficulties. It is crucial to recognize, however, that not all care settings understand sympathy in the same way or place value on effective home signing as what we should all be aiming for. Moreover, those that do are not necessarily better places to work. Jodie is a middle-­aged white woman I interviewed, who has more than twenty years of experience working with special needs individuals. She described her realization that people she was working with were not as limited as stereotypically imagined, and were more honest and reliable than other people in her life (she specifically mentioned dishonest people she’d dated). At her facility, clients on average are in their sixties and older, and their diagnosed disabilities are wide-­ranging. She mentioned one person

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who is entirely dependent on home signs: “We have one person who does sign language, but it’s his own sign language he made.” I wanted to know if staff learned these signs over time. Yeah. And, um, once you get to like just working with [him] a little bit, he’ll point to things and like if he’s trying to say something, we’ll say different words and he’ll do whatever sign he has for that . . . One individual, if he wants to look at the schedule, he’ll go [outlines a square with hands] or if he wants to go for a drive [raises balled fists in front of her face like gripping a steering wheel].

Jodie explained that it is incumbent on staff to learn these signs for each individual. At their facility, people who formerly cared for newly arriving individuals might offer an overview of the ins and outs of caring for them during intake meetings. Sometimes, though, “there’s that rare one” where no explanation is provided at all—­not until a crisis occurs and outside caregivers have to be explicitly contacted for help, generally help with translation. They are usually happy to do so, Jodie said, but often they respond, “like ‘oh, we didn’t think about that because we haven’t seen [the challenging behavior] in so long.’” Seen in this way, it would be better, in Jodie’s view, if prior carers were more aware of home signs as legitimate communication, as something worth teaching others. That said, she added that many of these home signs are better learned in practice in an individual’s new environment anyhow—­they can’t really be taught. For one thing, the new context may be more chaotic than home: that can disturb many new arrivals at Jodie’s center, but it’s something they need to get used to. Even if prior caregivers did come in to help “translate,” this would be hard to do, in other words, because the context is so different. Place-­based contrast and contact being so important for home signs, it may be that all new communicative strategies have to be created to fit with a new “home” with an unusually busy and crowded atmosphere. Generally, not many parents or guardians of residents will come in and spend a great deal of time at the facility, which Jodie attributed to many of these carers being quite elderly. I got the impression that this is why many residents were at the center to begin with, because their parents and guardians could no longer look after them. But other individuals have a more complicated past. They might come from abusive backgrounds, for instance. Two of the individuals at Jodie’s center were originally from Willowbrook and had what she vaguely referred to as a “very bad past . . . a really rough past” (see chapter 1). For those individuals, and people like them, it is necessary to learn their gestures, their “language,” quickly so that new carers

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can get a sense of whether this is a “bad day” for them. “So on a bad day they know they can go to you,” she said. Building sympathy, in these cases, might be very slow to develop. You might learn someone’s signs before they really trust you, but it will help the trust come over time, Jodie explained. Jodie’s center is one where trust is paramount, in fact, and sign work may be part of that. There are other moments and other facilities where communicative acts of individuals are downplayed and, instead, care workers are encouraged to read their signs in a one-­way fashion, over the shoulders of those they care for, as it were. Another care worker, Jessie, appeared briefly in the introduction as someone who helpfully challenged my idea of “nonverbal.” She made me think of that sign as a sign, as one that could misrepresent the reality of Charlie’s ability. A white woman in her late twenties of roughly average height and build, Jessie is originally from Long Island but moved to the Southern Tier of New York for work years ago. Always dressed casually and sporting a ponytail, as if ready for any activity at all times, Jessie always struck Jeanne and me as down-­to-­earth and practical, relaxed and easygoing. It took a lot to upset her, but at the same time she was extremely reliable—­always on time, on task, and up for whatever we needed. When I had trouble, for a time, getting up to get Charlie on the bus in the morning, Jessie agreed to show up at the crack of dawn and yank him out of bed. Jessie was also outspoken and confident in her realm of expertise, which was special needs individuals. When Charlie’s digestive troubles baffled us, Jessie was the one who suggested we reduce the amount of gluten he ate, which seems to have led to more regular bowel movements. When I felt that Charlie was refusing most forms of play, it was Jessie who pointed out how much he liked tickling (see chapter 2). Jessie worked closely with Charlie for several years after we moved to the area, while simultaneously serving as a classroom aide at BOCES (before he started to go to school there). We have probably measured every carer who has worked with us and Charlie over the years, unfairly perhaps, to Jessie. Her relationship with Charlie grew so that, by the time she got married, Charlie was invited to the wedding. People we’d never met came up to greet him at the reception, as if they’d known him for years and we were his plus-­ones. Not long after that, Jessie left both Charlie and BOCES behind to work for better pay in a combined administration and caregiving position for a local disability organization. In our interviews, Jessie explained that her time at BOCES better prepared her to communicate with nonverbal (or semiverbal) people in her new role, but this was a skill she had to learn. “People tell me all the time I have the patience of a saint, but you have to, you have to take the time.” What makes Jessie stand out from her co-­workers, in her mind, is that she

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tries to attend to the home signs that individuals bring with them when they join her facility. Like other carers I have talked with and observed over the years, Jessie foregrounds semiotic improvisation. During one interview, she explained this by telling me about one of “her individuals”: So we have an individual . . . who has very limited speech, can only say like “yes” or “no,” very spotty on the sign language (was never taught properly), um, but makes up his own so you can kind of get it. No one else in our program can ever understand what he is saying, he will try and he will try and he will try and to the point where him and another staff member will get frustrated and they will just be like “go talk to Jessie!” And he will come to me.

What does Jessie do for this individual that her co-­workers do not? She is good at manufacturing and interpreting home signs. While “yes” and “no” are part of a shared linguistic code, when that is all you have to work with, home signs fill in the gaps: He will talk to me in his own language and he knows like no one else really gets it, but he will say a little bit and then expect you to repeat what you think he’s saying. He won’t try to give you a whole sentence. So it’ll be like, he’ll make the hands-­driving-­a-­car gesture, and I’ll say, “you want to go out on an outing?” And he’ll go “yes” and I’ll go “okay, let’s go look at the board now.” He can’t read the board, but he knows what he wants to do, so I start listing off the outings and he’ll pick Meals on Wheels. We go out and deliver food to Meals on Wheels. Um. And then he’ll try to say “who,” but he can’t say “who.” But the way he moves his mouth, he makes like an “O” with his mouth, so I know he’s trying to say “who,” so I’ll sit there and I’ll teach him, and I’ll go “who” and do the [ASL] sign for “who” and he’ll go “yes.” “You want to know who’s driving?” [Speaking as if she is the individual] “Yes.” So I’ll get up and tell him, and he goes “okay,” and then he’ll walk away . . . It takes a while to get to “I want to go to Meals on Wheels, who’s driving the van?”

Here, Jessie is recounting the translation of two sentences into a variety of mutually created signs and gestures, some official English and ASL, some idiosyncratic home signs and best guesses. For Jessie, using home signs is about appreciating the people you work with as unique: “We say it all the time . . . ‘you have to know your individual.’” This was often

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modified in conversation, described as “your,” “my,” or “our” individual, in a way that grammatically suggests the complex negotiations of dependency in care. But there is another side to Jessie’s account. There is a sense of competitiveness or of uneven expertise. Who can “do it” and who cannot. Jessie, in her narrative, can. But what does that feel like for her co-­workers? Gwen made clear, based on her year at BOCES as a special education classroom teacher, that this kind of work is not for everyone. The way she described her staff—­the seven aides in her classroom every day—­it was as if some showed too little and some too much sympathy with the students. This was especially hard on Gwen. In her first year out of college, like most people in her profession she was tasked with running a classroom. That meant preparing lesson plans, individualized for each specific student according to their diagnosed conditions and specific objectives, which she had been trained to do in college. It also meant managing staff, aides who were paid less than she was and who yet did most of the hands-­on work with students. She’d received no training on that. Even when Gwen spoke normally, it was easy to see she was a little unsure of herself. To be fair, though, when we spoke, I was not only a parent of a student but also a college professor, the kind she had been routinely graded and evaluated by until just recently. So maybe she had extra reason to be nervous during our encounters. Regardless, it was easy to imagine her having trouble confronting aides who seemed detached from students, who would not put their phones away, for instance, or seemed unsympathetic to the students’ struggles. This was rare, admittedly, but at least one of Gwen’s staff had to be reassigned as a result of lacking the requisite “personality” for the work. But even more difficult in some ways were aides who were close with students and so badly wanted them to succeed that Gwen would find them preventing the students from learning on their own and expressing themselves. “I want all of them to recognize black lines and to cut on the line,” she told me. This kind of scissor work is familiar to Jeanne and me, since it is one way that both literacy and arithmetic are translated into tasks that someone nonverbal, like Charlie, can do. Ideally, aides would use hand-­over-­hand to encourage the students to do the cutting themselves, but some staff, according to Gwen, “want to help so much that they just do it for them.” A similar issue surrounds too much talking in the classroom. Gwen explained that staff would often narrate student actions, including especially those students who could not narrate their own. But this is exactly something you are not meant to do, according to pedagogical systems like TEACCH, which were designed for people on the autism spectrum. With TEACCH and methods like it, any external stimuli (including especially

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verbal language) are meant to be actively repressed by the instructors so that the learner can better focus and better express themselves. Jessie knows how that feels, having worked at BOCES, though not with Gwen. She began working with people diagnosed with linguistic impairments when she was just seventeen. Early on, she says, she made the mistake of speaking too much, for instance, and shutting down the individual’s own communicative efforts. For example, she would simply repeat herself when there were communicative uncertainties: Wan Chum: Are there basic strategies when you first meet somebody who you know is on the spectrum? What might you have done that now you know is a rookie mistake? And now what do you do now that you know better, in terms of first meeting somebody? Jessie: What I would have done is get frustrated, obviously, um, I would have kept repeating myself over and over and over again, and now I have learned that when first meeting somebody, I like to just watch them. For however long it takes until it clicks in my head, because like I said I have been doing this a long time, I can generally get there. Um, but I just watch them, I don’t talk to them at all. If I know that they are nonverbal, I don’t say anything, I just watch them. You begin to realize their like baseline, their normal. And certain tics, certain body language . . .

Jessie’s description of her ordinary approach to meeting a new individual was echoed by other teachers and carers I interviewed in New York’s Southern Tier. Some of them, like Jessie, present themselves as naturals or as having accidentally developed the patience to study others. But that was not something they necessarily could do originally, as Jessie makes clear; they might have had to work at it. On the one hand ,sympathy is earned with each new individual you meet. In a sense, you always start being on the outside looking in. Jessie: It’s frustrating for me because I feel bad that I can’t help . . . right away. If you looked at me and said, “help Jessie, help,” I’d be able to help you [laughs] but [some people] get frustrated because they’re trying to say something to you. Wan Chum: And they know what they want to say. Jessie: And they know what they want to say and even, um, someone who can’t verbally speak at all, they might be trying to tell you what they want in a different way and in their head they might be saying “I want a cookie, get me a cookie,” but we can’t understand it.

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In these instances, the people you are working with and caring for know what they want to say. They know they are using signs as signs, but the problem is that others don’t know them well enough to grasp their meaning. Jessie, for one, hopes that carers figure out how to do this better each new time. People who don’t ever improve are likely to be given another role within the same institutions (for instance, a move to administration), or they drop out entirely. I did not talk to many people who fit this description, though not everyone who has worked with Charlie over the years has done as well as Jessie. Some would start with a lot of optimism about their ability to relate to him, then quit after a few days or weeks saying they weren’t a good fit, they just “didn’t get him” (see chapter 1). For these would-­be carers, home sign fluency is a demand they cannot satisfy. In fact, it is not always necessary to use home signs to do care work of this kind. Developing sympathy does not happen in a vacuum. In different social settings there are different expectations about what that looked like and whether learning home signs was something to strive for. In some cases, the demand for someone—­maybe someone gifted like Jessie—­to “get” individuals may raise home signing to the level of an institutional mandate. In other cases, the nature of care relationships means that whether or not a sign is intended is beside the point. Maybe whether an individual sees a sign as a sign is irrelevant to getting their needs met. Wan Chum: Can you give an example? Jessie: I’m trying to think of one on the spot now! Okay, normal baseline, a lot of autistic children and/or adults have a thing that in the . . . I call it the BOCES world, but the School world maybe, they have “stim.” You start to learn what’s a happy stim, what’s an angry stim, what’s a hungry stim . . . if you watch them long enough you can decipher . . . between body language, is their body calm, are they rocking a lot, is their rocking due to frustration, or is their rocking as a self-­soothing, because there’s added stimuli around . . .

In the BOCES world, as Jessie calls it, carers need to shift back and forth between “deciphering” meaning from the behavior of those in their care and being ready to respond in kind. There might not be time for any kind of communicative exchange, that is, because it is enough to read unintentional body language. Sometimes, in Charlie’s case, he might be engaging in repetitive, frenzied behavior that is known in the world of the autism spectrum as “stimming.” He might be holding a bottle of soda between his hands, allowing it to bounce delicately from one palm to the next, all while focusing squarely on the bubbling-­up carbonation, mouth agape, a high-­pitched

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squeal of delight echoing through the apartment. There is nothing to “read” here in terms of a home sign request, as far as we are aware. Or, better said, it may not be important in our household or in the BOCES world whether such body language is intentional or not—­what matters is that the individual is handled so they stay on task, avoid a meltdown, remain focused. In our case, we may want Charlie to attend to his behavior, when he is stimming like this, not to dissuade him from it, but to make sure he does not spill soda on the floor or, if he does, that he learns to clean up the mess. Similarly, BOCES aides need to navigate Charlie’s seemingly unintentional behavior, all while steering him toward schoolwork or class activities—­and that can mean disregarding it as potentially communicative. This is not how Gwen described BOCES, from her perspective as a teacher. She did not say anything about ignoring or disregarding behavior, as did others I spoke with. But given the challenges that aides face working more directly with students, it makes sense how contradictory approaches like this could develop in the same setting. In Jessie’s case, she prefers to make assumptions when she first meets someone who doesn’t speak. For example, she assumes that their “body language” will include important information even if it might sometimes seem otherwise. Over time, with enough patience, she thinks they can get to know one another’s intentions and goals. In the BOCES world, the one she left behind, this pathway from open-­mindedness to shared meaning is less important, she claimed. At least it might be for classroom aides, despite the intentions of teachers like Gwen. Gaining sympathy can be about deciphering stimming activity, for instance, which can lead to possible communicative exchange, but is more centrally about knowing what “individuals” might want before they know it themselves. That is, the BOCES world for Jessie and others is about managing students more than it is about sharing meaning with them. Home signs are therefore potentially overmined, that is, lost as a result of overriding concerns with steering student-­aide relations so that they meet social and institutional demands. While this can lead to a good working environment, it is not about fostering new patterns of communication, which, for Jessie at least, is caregiving at its most exhilarating and mutually beneficial.

Hominidae Home Signs and Their Controversies In some contexts, finding significant others (those with whom one shares degrees of sympathy) can either generate or inhibit the growth of home sign exchanges. This could be the case in the “BOCES world,” as characterized by Jessie. In other situations, sympathy might develop in such a hierarchical

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way that it can lead to conflict, even a sense of exploitation (home signing is part of the abstract labor power that care workers are paid to provide, after all). In theory, this can always occur when trying experiences trouble close relationships, especially experimental ones. This is especially the case when miracles happen—­and that brings us back to famous apes in captivity, introduced in chapter 3. Like Kanzi the chimpanzee, Koko the gorilla was taught to communicate with humans from a young age. However, the primary emphasis in Koko’s training was not to use objects to stand for language (as in the lexigram discussion in chapter 3), but to form gestures based on a modified form of ASL. That said, in both cases operant conditioning and Thorndike’s “law of effect” are involved in the process. My interest here concerns how sympathy enters into this interspecies sign work, which famed ape language researcher Francine “Penny” Patterson controversially refers to as “Gorilla Sign Language” (or GSL).22 As Savage-Rumbaugh was for Kanzi, Patterson was Koko’s significant other—­her teacher, friend, and carer in central California. While critics have long questioned whether GSL approximates truly symbolic language,23 few doubt that some kind of system of communication was developed between Patterson, Koko, and the other participants in the project over the years. At the very least we could say that there was a lot of home signing going on—­signing as nonsymbolic yet innovative and specific to a particular group, a group with enough shared sympathy to have it. In keeping with what has been said about home signs in previous chapters, the “languageness” of GSL is therefore left in suspense: we may never know for sure whether to classify it as definitely the same as or different from language as commonly understood. GSL instead rests uncomfortably beside and beyond language, and it is perhaps better thought of as “Hominidae home signs,” or HHS, referencing the Linnaean primate family to which ape and human both belong). HHS would be what primate cousins can possibly share that is neither purely human nor purely ape. What is known is that those who used it, namely, Patterson, Koko, and the research team, were familiar with one another as significant and signifying others, and they could communicate in semi-­reliable, semi-­regular ways. Put differently, my interest here is not in how much the communicative medium of these experimental contexts resembles language use between humans, but in how much it resembles nonlanguage use in general for lots of beings. As Sue Savage-­Rumbaugh has noted, with respect to her chimpanzees, one seeming precondition for there to be any ape language success in experimental settings is for the primates to have been raised by parents.24 In other words, for sign use to occur, however it is classified, there first needs to

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be a reliable foundation of social relating—­not just any form of relating, but the sympathetic kind. Home signs require forming good relationships, broadly speaking, but those involving apes like Koko took place in captivity. The condition that allowed for the Patterson-­Koko collaboration to happen was, in fact, the debilitating care Koko received in her early years. When Patterson first arrived, as an eager, young white student from Stanford, Koko was failing to thrive in the custody of her ape gorilla parents. Unlike Koko, they had been captured from the wild and, like many great apes in captivity, struggled to establish social and caregiving relationships while living behind fences like what they might have had in the forest. Patterson took on that role in their stead. With her care and tutelage, Koko eventually learned to form more than one thousand words of GSL and, allegedly, to understand many more spoken words of English. The key ingredient that made this possible was a close, long-­term relationship between a captive gorilla and a human woman. Indeed, this also allowed Koko to form yet more cross-­species relationships, including famously with a pet cat.25 But there is a prevailing glottocentric obsession with looking beyond “mere” home signs. So neither Patterson nor her interlocutors could resist using Koko’s GSL to comment on the apparent naturalness of human communication by comparison (see chapter 3). Critics have long been skeptical of the claims surrounding Koko’s signing, but they too often express that skepticism by reasserting the supposed naturalness of human communication. They tend to query, for instance, whether a gorilla can truly comprehend the subtleties and rules of grammar “young [human] children seem to take to without effort”26 or what role the ape’s interlocutors play in translating “nonsensical or unresponsive” utterances into acts of “saying.”27 To be more precise, the problem for these critics is not simply Koko’s apparent “gorillaness,” but the conspicuous co-­construction of her utterances that encourages critics to overmine whatever communication is going on. As discussed in chapter 3, similar complications arise with the attribution of speaker roles in impaired human speech,28 where seemingly “­incompetent” speakers are aided by, or are seen to be mirroring, another with greater linguistic skill. Similarly, according to speech and language instructors I have talked to over the years, and as echoed by Gwen in the preceding section, too much unnecessary language can ruin language habilitation—­for instance, adding praise or expanding prompts into unnecessarily larger sentences. In so doing, language trainers may mistakenly take the learner’s completion of a goal-­oriented task as evidence for greater linguistic competence than might actually exist. If forms of assistive or experimental communication can sometimes raise anxieties, it is precisely

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because of this paradox—­that successfully increasing communicability between two beings may instead appear to widen the gulf between them. Whether or not a fair assessment can be made of Koko’s prowess, most critics seem to agree that the mere orchestration of a nonhuman ape’s linguistic performance, its continual documentation and narration, is itself impressive. This is so even if language is not happening in precisely the way Patterson and her colleagues have argued, because the relationships formed are worthy of note. Prior to this experiment, in fact, the prevailing assumption about gorillas was that they were far too powerful and dangerous for a human being to get close to. One of the reasons that chimpanzees became a darling of experimental research was that gorillas had done damage to equipment in the past.29 Koko was only able to come under such scrutiny because of the successful development of newly formed trans-­species pidgins (or HHS) to make her an observable, testable, questionable subject in her forty-­ six years of life. This does not remove risks for the participants involved, however. Close relationships are not thereby safe ones, far from it; it might be said that, violence aside, only those who know you can really hurt you. I am quite certain that Charlie is more hurt by my or Jeanne’s disappointment or distress than by most other things in this world. Likewise, on some level I think he knows how much it pains me when he does things he isn’t supposed to, spilling drinks or throwing food, threatening or engaging in aggressive behavior, refusing to do chores, learn new things, or go to unfamiliar places that for some reason I insist on. Jeanne and I can also really hurt each other if we want to, and sometimes we have, which only makes the fact that we normally decide not to all the more impressive to my mind, especially when times are tough or we’ve had bad days. God, I really love them both.

Nonhuman apes trained to sign are generally better at seeming human than most other animals. They can even appear to have very human desires, as with Koko’s kitten. But, by that same token, they can also affect humans in new ways, even harm them without falling back on physical force (see chapter 1). In 2005, Koko was accused of sexually harassing former members of the research staff, having touched or repeatedly asked to see their nipples. Here is how one account, critical of what most obituaries of Koko were leaving out at the time, summarized the alleged incidents: In 2005, Kendra Keller and Nancy Alperin, who had been employed by the Gorilla Foundation the previous year, took Patterson to court because, they alleged, “Patterson instructed Keller and Alperin to engage

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in the sexual act of removing their clothing to expose their breasts to Koko, in particular, their nipples.” The lawsuit alleged that in response to signing from Koko, Patterson pressured Keller and Alperin to flash the ape. “Oh, yes, Koko, Nancy has nipples. Nancy can show you her nipples,” Patterson reportedly said on one occasion. And on another: “Koko, you see my nipples all the time. You are probably bored with my nipples. You need to see new nipples. I will turn my back so Kendra can show you her nipples.”30

Koko’s behavior gained media attention because it involved allegedly sexual content, but the problems raised are really about how persons are recognized as ethical subjects. This requires not only decision-­making, at minimum, but also recognition by others that decisions have been made, as it were, freely. In this respect, the lawsuit and its public reception reveal a willingness to entertain Koko’s moral co-­presence, in terms of her awareness that signs are signs, including requests for nudity from others who know what you mean. Words are the easiest way to demonstrate, performatively, what one’s intentions are, but their circulation and objectification can lead to hazards all their own, most obviously around the politics of consent. And this creates problems not only in situations of ape language but anywhere where words are unavailable to potentially sexual subjects.31 I do not want to talk about this, but the problem is that neither does anyone else. I find myself, while I write this, constantly thinking that Charlie is going through puberty and showing signs of development in that direction (e.g., hair growth). I really do not know what counts as appropriate behavior on his part from this point forward, given that we expect him to grow into a physically typical man and given that we are effectively raising someone who may never or should never have sex, at least by dominant societal standards. Without the capacity for clear, symbolic communication how could he ever provide clear consent to anyone or learn to recognize it in another? For the same reason that I do not see how Charlie could morally be made to provide labor for a “contractual” wage without it being tantamount to indentured servitude, I do not see how any sexual activity with another person could be anything other than legal rape. Already I am frightened by my language. It was partly fear of rape that helped legitimate the horrible actions of eugenicists in the early twentieth century to sterilize, jail, and murder hundreds of thousands of impaired people in the name of

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able-­national security and progress. My fears are in danger of being confused for the biopolitics of a hateful era that has not left us. I have no reason to question my son’s morality at this time in his life. He is one of the kindest and most honest people I know. But, I do not know how Charlie could have a meaning ful sexual encounter with anyone that, in the absence of clear consent, could avoid being legally equivalent to them raping him or him raping them.

For anyone who cannot appear to use words, it can be difficult to be recognized as full-­fledged ethical beings, for at least three reasons. First, what should they think and do about their own intentions and desires? Second, how can they represent or reflect on this to themselves, or have it represented to them, in a way they will understand? Third, how can they make it known to others that these representations of their own behavior are understood? Having unnatural language learners face to face requires that these questions be carefully considered and debated. These questions are taken up in theoretical debates about ethics (see chapter 5), and they often depend on language. Avoiding them only reveals how our own words can be used to disguise and dissimulate the messy reality, not only of being close to other people but of living alongside one another’s bodies. Well before the Koko scandal, it was readily assumed by some early modernist writers that experimental ape language would lead to accusations of sexual impropriety. In his short story, “A Report to an Academy,” Franz Kafka anticipates reactions to great apes that dare speak. “I read an article recently,” an ape named Red Peter explains to a skeptical audience, “by one of the ten thousand windbags who vent themselves concerning me in the newspapers, saying: my ape nature is not yet quite under control.”32 In that instance, the reporter was claiming that Red Peter enjoys pulling his pants down for random people. Rather than deny the accusation, our narrator instead explains that this is done in order to show one of the places he was shot by those men who initially captured him, leaving him physically disabled.33 It is impossible to separate ape language trials from broader cultural narratives and assumptions about humans and nonhumans, supposedly civilized communication and wild signs, domestic captivity and brutal violence.34 These ideas partly mediate claims and counterclaims surrounding ape language research: the fallen scientist playing at god forms a perfect narrative complement to the risen ape playing a sinful human. Put differently, the context of relating, where the alleged abuse happened, is overflowing with potential cultural significance. That can make it hard to grasp the empirical reality of what happened in these unusual cases.

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It is early January 2023, and I am making final revisions to this book. I am feeling very good. Dusk is settling in on what was an unseasonably warm day, and Charlie just started going back to school after the winter break. One of the anonymous peer reviewers of this manuscript asked for “more Charlie” to illustrate examples, so I am actively looking for places to do that, after which I plan to go for a run for the first time in weeks. It’s hard to do that when captive apes are involved, because my mind worries about these comparisons. But I include them for a reason, despite my discomfort: because many researchers have shown that challenging myths about language and communication can mean ­playing havoc with the assumed gulf between humanity and animality. Over the holiday break, Jeanne and I noticed that Charlie seems to be replacing his “slap” [mentioned above] with vocalizations, normally something like a loud, sharp “Bahh!” Jeanne is excited that this could be a sign of words to come, while I am skeptical that it is anything but a verbal slap of sorts. She even thinks some of the vocalizations could be roughly equivalent to “Mom” and “Dad,” but I am not so sure. Even though we differ over what is going on “inside” him, we have learned to set that to one side and focus instead on encouraging outward behavior that we want to see, whether it is genuine language emerging or just more home signing. So every time he vocalizes we “answer” him and hope this encourages him to continue: “I’m worried if we don’t, he’ll stop,” Jeanne confides to me, a tinge of raw desperation in her voice that I’ve come to expect when his language development is at issue. True pragmatists, we target the action itself and hope his mind catches up, which is more or less Thorndike’s law of effect in action. This is also what some ape language researchers did, I tell myself, shuddering at the comparison my mind makes and the skeptical doubt “inside” me.

It is clear that Patterson and Koko are significant for each other, significant others in Sullivan’s terms. This is precisely what makes the intentions of both suspect in the resulting controversy. Is Patterson covering up for the ape she knows so well, has cared for and about so much, and has profited from professionally? Is Koko taking advantage of the researcher’s support, learning to manipulate lowly staff, finding new outlets for sexual desires? or even engaging in political resistance? After all, they have all seen Koko’s nipples, a fact that few who have commented on this story think to point out. Who knows, but no such request and no harm could happen at all without there first having been a context of regular and routine home sign use,

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built around the obligation to communicate with and satisfy the needs of the gorilla in the room, a home sign regime (HHS). Perhaps this explains why Patterson’s defenses against accusations of impropriety have typically been some version of “you had to be there.” By this I mean that she tends to appeal to the necessity of flexible and sometimes uncomfortable exchanges with the captive creature as part of what is admittedly a highly unusual experimental setting. One news article referred to this as a “simian nipple fetish”35 and cited as evidence part of a transcript from a public AOL chat involving (Penny) Patterson and Koko in 1998: AOL: Question: Do you like to chat with other people? PENNY: Koko, do you like to talk to people? KOKO: Fine nipple. PENNY: Yes, that was her answer. “Nipple” rhymes with “people,” okay? She doesn’t sign “people” per se, so she may be trying to do a “sounds like . . .” but she indicated it was “fine.”

On the one hand, the presentation of the transcript as a news item is meant to suggest that Koko is a full participant in the dialogue, an equal party who speaks in turn, perhaps even one whose words say too much, who incriminates herself by exposing a “fetish.”36 On the other hand, Patterson’s explanation for Koko’s linguistic error (metonym? Freudian slip?) serves as a reminder that this is a mediated ape, in some ways an extension of the researcher . . . and vice versa. Depicted as partners in crime, the two female primates evidence the same tension between them in other news accounts of the lawsuit, which alternate between naming Koko and Patterson as the ones held legally responsible. The other thing that is happening here, after all, is that Patterson is co-­constructing the meaning of Koko’s GSL, offering an elaborate explanation, which, whether it is “true” or not, is something that Koko’s collaborators often did. As mentioned in chapter 3, this is only possible to do with a large ape by establishing a shared context of familiar interaction, of sympathy. Outside of courtrooms, in social life we are not only interested in who is really speaking and what they really intend; as significant others, we also build meaning with one another in radical and sometimes troubling ways. Situations of intense, experimental, obligatory sympathy can provide the context for abuse and exploitation as well. Sympathy sounds nice, but it isn’t always. The related concept of “care” can also sometimes be treated as if it were always good, intimate, even saccharine.37 In popular English parlance “home” can have these connotations as well. “Home is where the heart is.” “There’s no place like home.”38 Partly for these reasons, I started this

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book with a chapter on the everyday and extraordinary violence that can be caught up in intensively home-­signing situations. I did this to disabuse the reader of an overly rosy depiction of home signs, the mis/­interpretation of which (in certain situations for some people) can literally be a matter of life and death. It can be hurtful, too. It can be terrifying.

Aren ’t We More Expressive Thus? In those intimate social situations where home signs prevail, we can feel at our closest to others and also at our most vulnerable. Sullivan, like most psychiatrists, understood that significant others know how to hurt us in ways others cannot. Think of an in-­joke made at our expense, or a swaddled infant left alone, crying in the crib. Virginia Woolf ’s fictional characters make very clear the highs and horrors of unspoken sympathy. Here is a characteristic line from To the Lighthouse: Mrs. Ramsay sat silent. She was glad, Lily thought, to rest in silence, uncommunicative; to rest in the extreme obscurity of human relationships. Who knows what we are, what we feel? Who knows even at the moment of intimacy, This is knowledge? Aren’t things spoilt then, Mrs. Ramsay may have asked (it seemed to have happened so often, this silence by her side) by saying them? Aren’t we more expressive thus?39

Woolf ’s characters often recognize that they are more expressive when silent, more in tune with one another nonverbally than verbally, but that does not do away with the dread of loneliness and the threat of death. In some cases, knowing someone knows you well can also lead to new and unexpected injury. Maybe the best examples of home signs are about sympathetic connections between people, whether they share a “home” or just know each other well enough to guess correctly. I know him, I tell myself, and it makes me smile. It is a winter weekend in 2022 and I know Charlie better than I know anyone. Better than I know myself. Maybe better than anyone knows anything about anyone. I knew just now that he wanted me close, after Jeanne left to go running. I knew that I should join him in his room and hold him tightly for a minute in a bear hug, then move away and pinch his fingers and arms a bit. And I knew at what point that would lead to an intense bout of tickling, until his laughter and mine filled the room. I knew when that was over. That he wanted to be alone. All the signs

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were there, and I read them with ease. Sometimes it is like this, and when it is, I feel less alone. I hope he does too.

In any situation of bodily communication, home signs may be shared more or less in common. When they are not, it can be hard to connect with someone. Maybe this explains what is perhaps the most common example of popular interest in kinesics. Purported experts all suggest that there is an advantage to be gained if one can only learn to interpret other people’s secret “body language.” As if there were hidden messages that people send out without realizing it (see chapter 1). This includes the assumption that there are universal or at least widely shared nonverbal signals that can reveal, for instance, if a politician is lying, if a poker player is bluffing, if a love-­interest shares your affections. It also assumes that bodily communication is always inadvertent or accidental, which is not true, even if it does involve acting on feeling and intuition more than on abstract reason (in truth, so does talking, a lot of the time). Today, handshakes are nothing less than the kinesic infrastructure of transnational capitalism, the means by which very different people can share a minimal degree of haptic touch so that commodities and cash can do the real relating on their behalf. This might seem about as far from a home sign as one could imagine. Yet, around the world people learn to shake hands in a certain style, which may be more or less formalized. Self-­help guides online, for instance, may offer explicit and colorful characterizations of what they consider good or bad handshakes, the value judgments they invite people to make, and the consequences this can have for you in competitive capitalist settings where a good impression can be the difference between making or losing a sale and getting or losing a job. One reason some people seek out experts, perhaps, is that much of the nonverbal communication we do happens in familiar and comfortable surroundings. When we have to meet, attract, bet against, or vote for complete strangers, it is hard to know what to make of them and what their intentions are. But most interactions are not between strangers who are looking to take advantage of one another, they involve familiar people with whom we create and share worlds. Those are significant others. These shared worlds involve more than private feelings, such as love, and ritual traditions, such as collective meals and gift-­giving; they include idiosyncratic but patterned ways of communicating. In our life with Charlie, we have to pay even more attention to how he moves his digits, waves his limbs, tilts his head, shifts his pose. This is intimacy, at its most palpable and most subtle. Most of the time, when I spend time away from Charlie, it is easy to forget again, to start to overvalue language and to underestimate the importance of home signs.

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I began this chapter by reflecting on a car trip to visit relatives. Charlie’s communication seems to work best when his surroundings are familiar and companions are close by. Home signs can work well on the road. But every time we take him to see other people, friends and family members mostly, our reliance on this invisible social choreography becomes more obvious. We all try frantically to adjust, Charlie most of all. This adjustment is as much about things as people, and demands extra labor on everyone’s part to recalibrate unspoken assumptions about movement and distance, the arrangement of bodies in physical space, and the rhythm and pace of events. If we stay long enough, they learn some of our home signs, we learn some of theirs, and we possibly create new, experimental ones. These changes are rarely dramatic. The result is not ordinarily a tense standoff or battle of wills. At worst it is occasional awkwardness. Some people might not even notice it is happening. In normal interactions, even between significant others, we routinely challenge the scope and shape of interactions in ways that are subtle and not so subtle.40 They might ask the meaning of a particular face or a sudden burst of kinetic activity. Why did Charlie suddenly get close to them, or run to the other side of the room and shut the door? Sometimes we suggest or they offer to change or rearrange their homes to accommodate his needs and extend our ability to stay. We do this every couple years, this is the third time. It is mid-­morning in mid-­December 2022, and we are at the local hospital, waiting for the anesthesiologist to put Charlie under. It was his dentist’s idea. He would never sit still for cleanings, and we can no longer effectively restrain him for even the briefest checkup, let alone X-­rays. The dentist calls these “spa days” because while he is unconscious, and after cleaning and evaluating his teeth, she also cuts Charlie’s toenails and fingernails, and shaves his head for us, things we struggle to do with him at home. This time we also asked her to shave his face and remove the wisps of curly brown facial hair that began sprouting last year. Before we can do any of this, though, Charlie needs to get a shot of ketamine. Jeanne and I are anxious and stressed. We have been at the hospital for two and a half hours already, most of that with Charlie in a gown and growing increasingly irate, his stomach empty from fasting for the procedure. Forced to wait, uncertain of what is to come, staff bursting in and out, Charlie eventually felt he had to make his spatial requirements clear to everyone. He began nervously pacing back and forth down the narrow pre-­op hallway, calling out “ya ya ya,” as if searching or calling for something. Jeanne and I understood.

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In an attempt to console him, we were eventually led to a larger and emptier room nearby by helpful hospital staff. The two, large masculine orderlies and additional nurses who ap­ peared at this time didn’t know what else to do at that point and said as much (I heard whispering that they weren’t “trained for this”). So we helped them understand that Charlie needed them far away and out of sight, behind a curtain. With Jeanne staying behind to calm him on the hospital bed, I huddle quietly with the remaining staff in the corner to carefully choreograph the rest of the scene. The person with the long needle will sneak around behind him: “think of yourself as a ninja assassin,” I say. I’ve said this before, when we went to a local drug store to get Charlie his COVID-­19 vaccine. It sort of worked then, and it’s our best option now. So that is what we do. With me ten feet away directly in front of Charlie, jumping up and down like a buffoon to distract him, Jeanne softly comforting him on his left side, the anesthesiologist sneaks quietly behind him and swiftly delivers the ketamine shot directly into his right shoulder. Charlie winces, but we get through it.

In any room full of people, whether they acknowledge it or not, Charlie is like a planet or, better yet, an unexpected meteorite, hurtling around and disturbing or warping every group’s gravitational forces of encounter, suspending and remaking their unwritten rules of social physics. In this way, if only for a moment, he might make them more aware of their own home signs. He might make them miss the orderly way they had been using looks, limbs, giggles, and grunts to communicate, perhaps without them realizing it, before his arrival.41 Or maybe they will be happy to be rid of those signing relations, at least for a time, and enjoy the way Charlie’s dynamism challenges the status quo in their daily life. I can’t rule that out, that his radical approach to relating might make other people more aware of what Sullivan called their as yet unformulated experiences. It certainly does so for Jeanne and me, and in fact has made this book possible. I think about communication differently now. Or maybe they will realize they miss how they normally communicate with their bodies in space and can’t wait for us to leave so they can get back to the significant and signifying others they know. Either way, Charlie would have helped them to see that, like a magician in reverse, who suddenly makes things visible you didn’t know were there.

[ C h a pt er Fi v e ]

Cacas Ergo Sum

Every morning, shortly after getting Charlie up, I escort him to the ­bathroom. I let him know I mean business when I grab hold of his legs and swivel them so they hang off the side of his bed, then take his right hand in mine as if to pull him up toward me. He then knows it is time to get up and slowly stumble, zombie-­like and still half-­asleep, to the toilet. Before he arrives there, I quickly check to see that he did not go in his bed already, which is now a rare thing but still occasionally happens. It does not always happen in the morning. Just last night, in early June, days before his sixteenth birthday, Charlie was asking for a massage while lying in his bed when I suddenly smelled urine. I wedged a hand underneath his bottom, palm facing down and couldn’t feel anything wet, but I also couldn’t get him to get up and head to the bathroom. No sooner did I back away than he abruptly stripped everything off his lower half while still lying in bed. That’s when it happened. Every so often, I don’t know why, Charlie’s adult diaper absorbs urine in such a way that the cottony material of the liner begins to disintegrate. Still contained by the gray shell of his Depends, the absorbent inside layer breaks apart into hundreds of small, cotton-­ball-­sized clumps of yellowish micturition. If they break free and spill out of the diaper, they are impossible to clean up. They become wedged in the folds of his skin, attached to his clothes, to furniture, and to the carpet. Essentially, each tiny, individual, urine-­soaked ball has to be picked up by hand and every place it has landed has been contaminated by human waste and needs to be cleaned also. Last night this happened, so as he swiftly stripped off his pull-­up, confetti-­like clumps of pee-­soaked material exploded all over him, his bed, and the bedroom. Startled and gasping in frustration, I yanked him off the bed and dragged him by the hand into the bath. I immediately 143

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felt terrible for reacting this way, and I could tell he was nervous around me after all the commotion I had made. This sense of guilt and shame (oh great, he’s scared of me now, way to go, Josh) was compounded by my dread at having to clean everything, again. In addition to cleaning up the exploded balls of urine, which follow him like a trail of poisoned bread crumbs to the bathroom, I had to strip his sheets off and lightly brush the surface of his mattress to examine how deeply the urine soaked through, whether I needed to spray pet stain remover again. Every mattress he has had eventually becomes discolored over time, as much from the chemicals I dump onto them as from being soiled. All other soiled items I stuff into the washing machine, working hard not to give any nonverbal signals of seeming as disappointed as I do, knowing he’s carefully examining my facial reactions, my movement as I hurriedly shuffle around the apartment, the tone of my voice.

Once we make it to the bathroom in the morning, I help him brush his teeth and hair, and apply deodorant to his armpits, which, like mine, are now filled with tufts of dark hair. Seeing the deodorant, cap off, aimed toward his pits is enough for Charlie to know to lift his arms. Seeing the toothbrush, toothpaste globbed on, aiming for his mouth is enough for him to bare his teeth and prepare to wince (since he really hates this). Manipulating these objects in this way serves as effective home signing (they allow him to infer my intentions through contact). There are other signs that Charlie came up with and initiates himself. He stands at the sink and holds out his hands to begin washing. He stands and turns away, pants down, to request help with wiping in places that, given his sizable girth, are hard for him to reach. These are very basic and transferable communicative cues—­he knows this is how hygiene works no matter what bathroom we are in, whether at home, a hotel, or highway rest stop. Part of the ideological mystique of formal language in the liberal, anglophone, contract-­based societies where we have lived is that “taking a stance,” “speaking up for yourself,” “testifying,” “speaking your truth,” or “finding your voice” are all widely valued means by which individuals can gain recognizable agency over their circumstances. This is evident in the broader literature on ethics as well, which I will address in this chapter. Habilitating hygiene and toileting, while widely ignored as social practices by anthropologists and other human scientists, are interesting subjects because they expose deep ethical tensions surrounding the discipline of generative labor, as well as the interplay of home signs and lifelong habits. This also introduces one of the clearest examples of that old adage from disability studies that abilites are temporary. If people are lucky enough to live long enough,

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many if not most will experience some form of incontinence. If you also struggle with verbal language at that time in your life, and even if you do not, you will likely find yourself needing to develop workable, off-­the-­cuff home signs with carers to get your needs met and improve their working conditions. I hope you can think of Charlie then, dear reader—­you’ll need him. Unlike the case with most of our home signs, I am fairly certain where our morning communicative exchange came from: Charlie picked it up from us doing the same thing, every day. Unlike most home signs, we hope these are temporary or, rather, that one day they will be replaced by his own habitual routines done in private. The problem is that, while Charlie is willing to go along when I lead the morning routine, it is not something he particularly enjoys. As soon as we are done, he sends me away with a gentle push (home sign ≈ “go now please, and shut the door”) so he can sit alone in the dark for a few precious moments more. I see signs that he remembers what to do every day, out of habit now as well as successful communication between us. But I do not see many signs that he is motivated to do it, as he ideally will one day be. He might sit on the toilet on his own first thing to start the day, but he will not complete the rest of these hygienic operations if left to his own devices. He might not even pull his pants up after using the toilet and stroll into the apartment half-­naked, seemingly satisfied that he has done the needful. Toileting, and hygiene more broadly, are where training the body perhaps most clearly meets the adoption of cultural rules and societal expectations. Gregory Bateson thought this was a carryover from the unconscious chemical signaling that all mammals do, but that it took on potentially new significance through hygienic practices: The nonhuman mammal is automatically excited by the sexual odor of another; and rightly so, inasmuch as the secretion of that sign is an “in­ voluntary” mood-­sign . . . In the human species a more complex state of affairs begins to be the rule. Deodorants mask the involuntary olfactory signs, and in their place the cosmetic industry provides the individual with perfumes which are not involuntary signs but voluntary signals, recognizable as such.1

Wearing deodorant (and by extension all forms of hygiene) are for Bateson a demonstration of a basic tension at the heart of the troubled and problematic language/nonlanguage divide. It is a voluntary decision to conceal involuntary signs from one’s body and therefore shape what other people make of those signs, about one’s dedication to hygiene, for example.2 Hygiene is a way in which all sorts of people, all over the world, communicate without

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words. They do so, as it were, on stage in front of others whom they may or may not know personally. The issue we run into with Charlie is that he needs and possibly wants people helping him prepare backstage, to help ready him for the more public performance of hygienic personhood we all expect. Think of it this way: Charlie’s approach to hygienic preparation is currently too social, whereas we, his carers, and New York state all expect him to be more autistic about it.3 Toileting is also something we have to bring up when hiring or training new staff and is one of the reasons it has become harder and harder to employ people to watch him as he has gotten older. Some care professionals, most of whom are women, have told me directly that they are not comfortable with this because of his age and biological sex. I understand, even though it is hurtful to hear. I do not know what their personal experiences have been like, and they do not really know Charlie—­ they just see or envision a large teenage boy who can’t speak and needs help in the bathroom. Such anxieties are common. When I interviewed Gwen, one of Charlie’s schoolteachers, she told me that one man on her staff would not take any girls to the bathroom who were menstruating. That is where they drew the line. Fear of contamination from bodily wastes is exceptional; I have found that most care workers are not squeamish in this way. But in another sense that resistance, that disgust and discomfort with our own and other’s peoples wastes, is exactly what we are hoping to inculcate in Charlie. We want to make him neurotically private about his hygienic practices, just as we are, but also to see them as absolutely necessary. The stakes couldn’t be higher, for Charlie’s future and our own, since the kind of care facilities he will likely end up in as we all age are radically different depending on how much autonomy residents are capable of. Toileting is a primary measure for such autonomy.4 This general attitude toward toileting fits with a broader societal narrative whereby disability “is something to be overcome through personal achievement and dedication.”5 Caregiving around personal hygiene is, I  would argue, one of the clearest examples of what Elana Buch calls generative labor, a term that “highlights the messy, disparate forms of practice through which people work to make life happen, and how these practices continually bring particular kinds of persons, social relations, and political economies into being.”6 As Buch’s ethnography of American home care agencies makes clear, generative labor is not about helping people to live as they want to live, but about helping them lead what are considered “meaningful” lives. This is another way of saying “lives that make sense and seem worth living for other people in their communities and societies.” In England and the United States, for instance, we learned to associate the generative labor of caring for Charlie with a culturally shared value of independence and

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self-­reliance, a value that many care workers—­overwhelmingly working-­ class or lower-­middle-­class women7—­are struggling to achieve in their own lives. Charlie’s Medicaid services are currently tied to what is known as “self-­direction,” meaning he is in theory choosing what is included in his budget, and who is hired to see it through. This was all put in place as part of successful disability justice activism in the late twentieth century. At the same time, it fits uneasily with our actual lives, since Charlie cannot really sign off, literally or figuratively, on budgets, employees, and invoices.8 In what follows I consider these tensions around hygiene from different perspectives on ethics. One comes from the ethical turn in anthropology and social theory, another from reflections on care work in critical disability theory, as well as on care ethics in feminist theory. Each offers a different way to think about toileting and hygiene, providing an opportunity to rethink care and communication in new ways. Following care ethics, in particular, Charlie’s hygienic home signing may not be standing in the way of his developing into the independent person he “ought to be,” and he may be forming and formulating a different semiotic ethics around hygiene, one that helps those around him develop into helpful and compassionate carers.

The Ethics of Hygiene The disclosure of the body’s liminality is something that most of us, whether we are able-­bodied or not, have always already experienced, for instance, when once upon a time we tried to climb a tree, do tricks on our bicycles, came sliding down a banister, used our beds for trampolines, tried to walk on our hands, turn cartwheels, balance walk on a wall, jump from high places or fold our limbs into impossible shapes . . . But alas, we no longer do these things, as we were invariably disciplined. Kalpana Rahita Seshadri9

At some point Charlie learned to take himself to the toilet when he had to defecate and now does so routinely. For years this involved home signs and coercive redirection. We experimented and agonized, constantly worried that he would shit himself at an inopportune time: in a public pool, on long (or short) drives, when stuck in queues, or at community events. If it took too long for us to notice when he went in his pants, he also might begin to reach in and smear feces on clothes, nearby surfaces, his face, us. One of the reasons, maybe the main reason, we became adept at using home signs to communicate with him is that we were accustomed to observing his expressions, movements, and gestures for any hidden signs that he might need to go. Many parents and carers of infants I have known report a similar

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awareness about their baby’s bodily functions (when they need to sleep, eat, be burped, be changed, and so on). Home signs can help carers and cared-­ for to dialogue about these interpretations, instead of imagining them as merely unintentional signals or symptoms. Most people might not associate nonverbal communication as readily with toileting as they might with, say, hugging or playing (see chapter 2). That is because around the time most (but not all) children learn to speak, they also learn to train their bodily functions, which in many parts of the world today means seeking out a toilet to use. There are good reasons for the connection between talk and toilets. Part of learning to use the toilet is not only about bodily control but about internalizing a culturally specific mandate about where, when, and how one releases bodily wastes. Psychologists have long noted that internalizing this forced choice—­making one’s body obey external directives—­is not only about our own internal desires, for autonomy, for instance, but about satisfying the people around us. Though the literature on hygiene and toilet training rarely frames it in this way, waste training is about ethics. This can be understood in at least two senses. First, it is about ethical relationships with caregivers. In the same way that the infant is meant to develop from being fed to feeding itself, the growing child is meant to develop from merely urinating and defecating wherever and whenever to doing so in a specific place and time. These are not guarantees, as Jeanne and I learned, but they are definitely culturally shaped expectations. For a dependent to learn to “hold it in,” as Americans put it, means gaining autonomy because by not relieving yourself you have relieved someone else from the responsibility of cleaning up after you. Becoming housebroken, as it were, means dutifully emplacing excretion. Jodie, whom I introduced in chapter 2, is a middle-­aged white woman working mostly with the elderly at a day facility in the Binghamton area. She explained that toileting presents specific challenges for her staff because it presents greater risks for all involved: “They’re vulnerable,” she said, “they’re putting their trust in you.” This is why it is one of the few activities in the program where Jodie works that is strictly divided in terms of gender. Workers can only take someone of the same gender as them to the bathroom to assist them with toileting. Given that there was only one man working in the program, at the time I interviewed her, that presents real challenges. Clients not only need to learn to train themselves to hold it for the toilet, but to hold it so that someone of their gender is available to assist them.10 If individuals with diagnosed disabilities are at their most vulnerable during toileting, in a way so are the staff who work with them. This is perhaps more obvious in the case of schoolchildren. I mentioned Gwen earlier as well, as a recent college graduate in her early twenties and Charlie’s former

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schoolteacher. Like Jodie, Gwen also divides toileting duties among staff on the basis of gender, and for similar reasons. Charlie’s school does not officially mandate strict gender divisions in toileting care until students turn eighteen, but Gwen, shy about asserting her authority over her aides in many other instances, made this a hard-­and-­fast rule from day one. She said that this was appealing to the aides she worked with who were men, in particular, some of whom said it would make them uncomfortable for it to be otherwise. She suggested that this might be because they are all relatively young and do not have any children of their own and have not done much childcare. Gwen said that a few of the men made a point of saying to her that as aides they preferred the gendered division. They imagined what might happen if someone walked in at the wrong time when they were helping a disabled girl to wipe herself, for example, worrying that someone might get the wrong impression and the child’s silence would only serve to incriminate the aide. We have thought about getting security cameras for our home but never have. Ostensibly, this would allow us to keep an eye on Charlie, but over the years we have also wondered if we should watch what our home carers do when we aren’t there. More to the point, we wonder if we should want them to know we could be watching. All of that makes Jeanne and me really uncomfortable, not so much out of a desire to protect the privacy of others as out of a shared desire to build mutual trust with the people who work with our child. We will always need people like this, and we need to accept their role in his life. If anything bad ever happens, though, if Charlie ever is abused, I know I will feel like I should have known better, that I was naïve and negligent. I am not quite sure how we would ever know he was abused, though, and I . . . frankly, I can barely type these words right now. When I was younger than Charlie is now, an older boy I knew from Boy Scouts, one who routinely bullied me in and out of school, also sexually abused me for a time. He waited until we were alone on a camping trip and then coaxed me into exposing myself and touching his genitals. I still hadn’t quite reached puberty and didn’t really understand what we were doing. He didn’t stop publicly bullying me after this, either, maybe because he was scared I would say something. Unlike Charlie, I had the ability to talk about what was happening but somehow couldn’t. I never said anything to my parents, my siblings, my friends, to other children, to our parish priest, to anyone. I just felt dirty and despicable. When I did finally reach puberty, my first sexual relationships were with other boys afterward, and I suspect that is

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partly because of what I went through. I feel guilty at the thought of my parents or my former partners reading this now, years later, knowing how that might make them feel. The rate of sexual abuse of children diagnosed with disabilities is reported to be astronomically higher than for other children. I’m alone writing on a summer’s day, Charlie is at school and safe, and I am holding in the urge to piss so that I can release these words instead. I am haunted by things that happened to me so long ago I can barely remember them and by possibilities that may never happen but that I can imagine all too clearly.

Threats and accusations of sexual assault were an unspoken concern whenever I would talk to workers about toileting or tickling (see chapter 2). The situation sounded similar to what Don Kulick and Jens Rydstrom write about the context of care work in Denmark and Sweden: “sexual abuse is the ominous greasy haze that hangs over relationships between people with disabilities and the individuals who assist them. Non-­disabled helpers, especially male helpers, are very vulnerable to charges of sexual abuse.”11 They are more focused on how sex plays a role in their informants’ lives, but even ordinary hygienic acts raise the specter of abuse and abuse accusations. And difficulties communicating only intensify these fears. Gwen said that not long before our interview, the parents of one of the young girls in her classroom had come to her, concerned. The student was largely nonverbal, like Charlie, and could not tell her parents whether something had actually happened. But they had noticed, reading her body language, that she was suddenly uncomfortable around them during toileting, something that had long since become routine. Instead of standing up to be wiped, after she finished, she would refuse. Instead of being comfortable with them in the room, she insisted on privacy, covering up with a sense of apparent modesty that she’d never shown before. It was not the absence of communication that raised her parents’ fears, Gwen explained to me, but the (real but limited) communication system they had fashioned with their daughter. These home signs had enabled them to look after her and discern her needs over the years, to respond to and guide her. But they’d found themselves in a new and newly worrying situation. Was she trying to tell them something? Had something unspeakable happened to her? Gwen was horrified—­this was among the worst fears of any classroom teacher, not only teachers of children diagnosed with disabilities. But she gathered herself and explained to the parents of the girl that, first, the school used strict gendered divisions of labor around toileting (assuming,

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with considerable statistical support, that men, and specifically cis-­het men, were more likely to abuse children than women were). More important, Gwen explained that their child was going through puberty and was perhaps smarter and more aware than they realized despite being nonverbal. Maybe she was recognizing changes in her body and how she felt. Gwen went so far as to compare the young girl’s behavior to how she herself felt as a child as soon as she started to change. The parents were satisfied and reassured, she told me, and there was no need for any investigation, nor did any further or clearer sign of abuse ever materialize. Toileting becomes caught up in a broader web of ethics when home signers are unable to become reliable witnesses to their privacy or, put differently, when the communication they can provide can only provoke legal and moral questioning, to obliquely point to abuse and trauma, but not speak it directly. With language, it would seem, people become more easily entrained to independently care for themselves. And even if they still rely on care to relieve themselves, they can at least use words to codify their experiences and interactions, to say what hurts, what helps, what would help them achieve some sense of dignity. Home signs appear to reach their limits here. After all, the ordinary way we think about ethics is often tied to formal language. Studies of ethical behavior suggest that adopting what Webb Keane calls a “third-­ person perspective” is necessary to reflect on our own actions. Imagining other people’s minds may ultimately be about feeling for, about being drawn into the suffering and pain of others,12 but it seems to begin with some awareness that what I feel is different from what other people feel. In this way we try, however imperfectly, to see ourselves as others might see us. Keane, like most scholars, writes that “the full flourishing of this ability seems to depend on the mediation of language.”13 What we say and how we say it is routinely caught up in our ethical lives.14 As established for centuries in Western metaphysics, from Plato to Grice, the ideal semiotic encounter is often assumed to be one with clear communicative intent, where a conviction is explicitly expressed or a stance is taken up. Only by knowing that other people are trying to mean something can there be successful communication, according to this way of thinking at least. The benefit of these approaches is that they provide clear criteria by which to judge everything from competency to moral accountability, all based on the things we do with words. For many contemporary anthropologists, cognitive scientists, linguists, neuroscientists, philosophers, and psychologists, similarly, to be counted as a subject requires at least a minimal degree of reflexivity (whether semiotic ideology or metarepresentation), that signs are signs. This characteristic of language can help make habitual ways of interacting with one another explicit.15 That allows for further abstraction, including

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entire libraries filled with instructions about how to be ethical or explanations of what ethics is. At the same time, I appreciate that Keane hedges his claim about the mediation of language (with “seems to”) since many other writers have merely assumed this to be the case and then proceeded to argue that language is a necessary ingredient to being a truly ethical agent. In chapter 2 I talked about tickling as a bodily means by which we might communicate and reflect on ourselves and others. Keane’s hedge is partly informed by research on infants and nonhuman primates, especially by Michael Tomasello and colleagues,16 which shows forms of ethical awareness, of thinking about other’s intentions and one’s own, apart from language. As Alan Rumsey summarizes this work: At nine to twelve months of age, still before beginning to speak, children show an operational capacity to understand that other humans are intentional beings like themselves, to construe their actions as goal-­directed ones, to understand their point, and to collaborate with others in triadic interactions, in the course of which they attend both to the object of shared attention and to the person with whom they are jointly attending to it, whom they understand to be doing the same with respect to themselves.17

From this point of view it is no stretch to suggest that home signs can involve ethical awareness (as in tickling), however seemingly “basic” when compared with higher-­order abstractions one finds in philosophy books. Keane also argues that whatever ethics we live by is also shaped by how we are raised—­by the social worlds we hail from.18 Each ethically attuned social world could be said to have its own home sign repertoire, ways of relating and communicating in improvised ways. However, that does not leave behind the specter of competence, the other side of the “full flourishing” of reflexive abilities. Many people argue forcefully that being diagnosed on the autism spectrum also means that the ability to take on other people’s points of view is corrupted from an early age.19 I can show that Charlie uses home signs and I can argue that we all do, but that does not mean we all use them in the same way or equally well. That is not just a problem for my book, my argument, it is also a problem in my life and a problem in the work, the generative labor, of caregivers employed by us and by the state to help Charlie. This brings us to the second aspect of the ethics of toileting, which gets to the ethics of hygiene more broadly. This is about taking into account other people’s points of view, insofar as you are not exposing others to your bodily releases and are thus respecting the culturally engendered sense of disgust that

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this might elicit.20 In all societies most (but not all) people learn to cough, spit, vomit, sneeze, menstruate, belch, and fart only when and how it is deemed appropriate, which means forming some ethical recognition of what others will feel if faced with your bodily byproducts and what they will think of you as a result, whether or not they are the one who cleans it up for you. It is easy to say that neurotypical or otherwise verbal children will develop “urges” and “feelings” during puberty; when it comes to Charlie’s future, we cannot rely on disembodied and distancing euphemisms or on the communicative competence it takes to have “The Talk,” as it is known. Instead, we are having to find ways to teach him to keep things like masturbation private without using words. I remember my mom had to talk to me about it at least once, when I was a teenager. It was one of the most humiliating experiences of my life and involved barely ten words spoken between us. For Charlie, this all comes back to Thorndike’s law of effect again. A behavioral consultant we’ve worked with over the years created two laminated cards for this purpose, a nice mixture of contact and contrast. One says “no” in red, which we would give to him and read aloud if he was doing something inappropriate in a public space. The other says “yes” and depicts a bathroom and a bedroom. We and our care workers spent weeks handing him one card or the other depending on what he was doing and whether he was already in a private place or not. We also tried to make clear in the tone of our voices and facial expressions that we were not ashamed or disgusted by anything he was doing, and neither should he be. We are afraid for him, to be frank. A simulated sex life might be possible for him one day, but I am not sure that desires like my son’s, whatever they turn out to be, will be considered by the adult entertainment industry, let alone sanctioned by other caregivers or the state. People around us are quite content to forgive almost anything Charlie does as the product of an innocent mind, for now. But innocence in American society is often equated with sexlessness.21 After a few weeks of handing him cards, he seems to have figured it out. While toileting continues to be a social interaction, for over a year now there are things that he does entirely behind closed doors, no red or green card needed. I don’t even know where the cards are anymore. Thank God.

Hygiene is about ethics, in this sense, because it is about care for the self in the eyes (and nose) of other people. In my own case, I was taught to use

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hygiene to publicly demonstrate to others that I care about and for their well-­ being. I do not want to offend others with my odor, I tell myself, because I want neither to be the direct source of someone else’s discomfort, nor for them to see me as someone who willingly becomes that source of discomfort, that is, as someone who does not care. And this now extends to my sense of ethical responsibility as a caregiver. If I forget to brush Charlie’s teeth in the morning, or he resists, evidence will linger in the air during the day that follows. It has happened at least once, to my embarrassment, that a teacher or school aide asked whether he might have digestive problems because of the smell of his breath. No, I responded, this was because I forgot to brush his teeth that morning. My embarrassment is layered, in the way that caregiving relationships perhaps always are. Part of it is about my sense of responsibility for him, for Charlie’s health, part of it concerns my desire not to be seen as failing him as a parent. Both collide when his bad breath points to something else as its cause (gut problems or parental neglect). Depending on how we make sense of these signs, in other words, they can create ethical dilemmas or demands. I know in my case, when I insist that Charlie brush his teeth or put on deodorant, I am hoping that the absence of bodily orders not only will help him learn good habits, but will be interpreted, even if only implicitly, as a sign of my good parenting, my generative labor. What makes this guesswork difficult is that it occurs without the benefit of collateral information that would allow other people to know you better and vice versa. Consider two instances. In one, you suddenly realize you forgot to put on deodorant before leaving home. In the other, you are unexpectedly overpowered by another person’s unmasked scent. In both cases the same problem arises: someone who gives off a body odor in public might have unintentionally forgotten to apply deodorant before they went out. Or they might have intentionally refused to do so. They might have unintentionally sweated through what they intentionally applied. Or they intentionally applied deodorant too conservatively to intentionally save their dwindling supply, and so on. You and this other person might have the same cultural conception of or natural reaction to odor, broadly speaking. But even so might have different daily routines that you share more or less in your network of significant and signifying others. In both cases, the relationship between voluntary/involuntary messaging and self/ other is complicated by semiotic guesswork. The same would go, in fact, for someone you meet with a strongly scented fragrance which could indicate an intentional attempt to mask unintentional odor, an intentional application of what is an unintentionally ever-­larger amount as a consequence of a growing inability to detect the smell . . . or something else entirely. It is not clear that Charlie can join in this broader ethical drama of

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guesswork about other people’s minds as mediated through their hygienic choices (and nonchoices). In another sense, the demand to take responsibility for one’s own hygiene is about swapping one set of nonverbal practices for another. The generative labor that we and Charlie’s other caregivers expend trying to get him to play the game our way is about reading signs as an ethically reflexive agent. This is one of the reasons why Jeanne and I routinely make Charlie apply deodorant before leaving the apartment. On the one hand, we do not want his body odor to offend others but, more than that, we do not want other people either to blame him for causing this offense (when he seemingly does not know any better), or to blame us for doing a poor job taking care of his hygiene (if they recognize his diagnosed disability and deduce that he does not know any better, but nevertheless believe that we, his caretakers, ought to know better on his behalf . . .). Charlie seems to want to keep the hygienic routines—­which are meant to occur backstage, behind the scenes—­social and relational. He wants to communicate and commune over his toileting and hygiene as it is happening, and not only on the public stage of ethical feedback loops. That is, though he’d prefer to do this his way, Charlie doesn’t always feel like going to the toilet at all. The great thing about home signs is that they require sympathy, though that brings a cost as well (see chapter 4). But unlike in many other cases, where home signs can feel like they are not enough like language, here Charlie “speaks” too much. The ethical demand is for there to be less communication, less relation, when it comes to the bathroom itself. The bathroom is ideally meant to be the space where we, as autonomous individuals, curate the messages we will present publicly. Just now, Charlie slapped his iPad to signal Jeanne and me to come. It’s a Friday night, and we are all in pretty good spirits, having been kept home all day together due to a sudden snowstorm. I hurried through the apartment and he was standing, waiting, in the doorway to the bathroom completely nude. I knew he had just taken himself to the bathroom and saw he had peed. But what he wanted was for me to find his plus-­sized pull-­up next to the toilet, completely dry—­he had independently taken himself to the toilet to urinate. It is hard to express how important this is to us, to him, to develop this ability. And I know what to do next, what he expects and wants. A giant smile on my face I repeat the same thing I always do, in the same exact way: “[Exaggerated gasp] Charlie! Good job staying dry!” [He faces me excitedly, still naked.] “I am sssso proud of you. I am sssso proud of you.”

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[With each lengthened sibilant, Charlie flaps his hands, opens his mouth, and releases a tonal, breathy moan, timed roughly in concert with my “ssss,” rocking from side to side on his feet as he does it.] It could be that we are both performing, playing up our reactions in this moment. But I am actually, really happy.

When you know someone well, you can communicate more clearly with and without words. But the thing you communicate about is your relationship more than what’s inside either of your mysterious minds. In the above example, for instance, Charlie’s reaction to my exaggerated praise is likely as much about how I say these words of praise as about what I am saying (see chapter 2). If I said, with the same intonation and rhythm: “Why them ssssole out of shoe.”

I expect he would react the same way. I don’t ever say that, just in case. I feel it would be unfair to him somehow, even if he doesn’t understand my words. My point is that, whether this is about sounds or symbols, or something in between, it is definitely and most importantly about an ethical bond between us. Him and me, there and then. When action or inaction leads to anxiety or uncertainty, we can trace that back to ethical demands. One way to take note of the results of generative labor is to examine what happens when conflicts over hygiene lead to tragedy. In November 2021, in Utah, a ten-­year-­old Black girl, diagnosed on the autism spectrum, committed suicide. Isabella “Izzy” Tichenor had been tormented by bullying. According to an investigation conducted by the local school district, both Izzy’s classmates and teachers repeatedly told her “that she smelled and needed to bathe” in more or less abusive ways. The same report does not relate this in any direct way to ableism, but based on what we ourselves have seen, this is not a difficult connection to make. The ethical game of hygiene is not one everyone plays the same way, and individual differences in sociality, in sensoria, and in style can become the source of oppression and abuse, with potentially devastating consequences. Any approach to hygiene, including Charlie’s, can be seen as a particular take on ethics with different social implications, that is part of a distinct social world of relating, including specific risks, for private care and public communication. On the one hand, with the backing of his school and New York state, we are pressuring Charlie to care about his own hygiene, to take on the routine himself; on the other hand, I worry that such generative labor

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could lead to his feeling ashamed or unhappy. Other people worry about the vulnerability of dependent toileting and the risks it presents in terms of real or apparent sexual abuse. In any case, there are no easy answers.

Thrownness and (S)tool Use I have said that home signs are slippery and hard to categorize, meaning they are neither clearly “natural” (inherited from shared ancestral evolution) nor “cultural” (learned from shared contemporary tradition), but often uncomfortably in-­between. The same could be said for excretion, which involves bodily necessities and social values but is not reducible to either. There is no known human community where people fail to reject their waste matter in some manner—­they leave it behind and often bury it out of sight. At the same time, there is no one way to do this, and people tend to differ over whether this is a more wholly private or partially public affair, whether it is done indoors or outside, whether it involves tools like toilet paper or leaves, devices like toilets to sit on or holes to squat over, or sewers or topsoil for carrying away or covering up. In whatever way this is preferred to happen, it is normally expected that most people will learn to take care of their own excreta, at least for that time “in between” when they are neither an infant nor an elder. It is hard to find many anthropologists talking about “toilet” training, all the same. Like tickling, it is mostly associated with young children and, therefore, with childcare, which in many parts of the world is performed by women and girls, and is ignored or ideologically devalued for that reason. Many more anthropologists have talked about language learning in children, by comparison. But one can find some information. If Charlie were Shona, at least in mid-­twentieth-­century Ghana, then according to anthropologist Michael Gelfand, we would be cleaning Charlie with “large green leaves from the mutufu trees,”22 which we would keep in a nearby basket. We wouldn’t teach him to flush anything, since there would be no toilets; the stool (which they called tsvina or dhodhi) would be wrapped in leaves and buried outside. If he was young enough, we would wash his behind with cold water (to toughen him up) and apply oil afterward. Like us, like most people around the world and throughout history, Shona assume that eventually the infant will learn to control their bladder and sphincter, to wait to go when it is appropriate to do so. In Charlie’s case, that means he has to learn to seek out and sit on a toilet, in a private room (as opposed to squatting over a hole or going in public).

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If I am honest, thinking about and entraining “acceptable” toileting behaviors probably takes up more hours of my caregiving time than anything else does. I certainly think about it more than figuring out how to get him to understand language. In the past ten years I’ve written two books about waste and co-­edited another, but it is Charlie’s waste that I really obsess over. In our household I am jokingly called the toilet tyrant (only by Jeanne, of course), though Charlie is familiar with the idea even if the meaning of the words eludes him. Anytime I am at a conference speaking, in a classroom speaking, anytime I am writing, my real life as a tyrant is in the back of my mind. I am writing right now, away from Charlie in the lobby of our apartment building. It is a warm summer day, in 2022. I am sipping a cappuccino I got from the shared community machine nearby and listening to ASMR through my big headphones (I tend to prefer soft whispers or mic scratching). The combination makes my heart race (from caffeine) and my body relax (from calming, spoken sounds). The volume is turned way up on my computer for maximum effect, but when people pass by, neighbors and apartment building employees, I turn it down out of embarrassment. It is a day when we have childcare assistance after school. Someone else is watching him, worrying over his toilet training. The sense of freedom when I have hours to myself like this feels exhilarating. I try to avoid feeling guilty. I try to remember that I need to take care of myself, as my therapist says: “when a flight is going down, you need to put on your oxygen mask before you put one on your child.” It is a weird analogy. Is my life a plane in rapid descent?

When I stop writing, I will go back to that life, and I do not know when I will stop living it. Actually, I do know. I will stop when I am too old to do it anymore and when someone starts helping me use the toilet. Levels of care criteria—­to receive Medicaid coverage, for instance—­often accept or require functional limitation in toileting, whether “dependency,” “need for substantial assistance,” “need for minimal assistance,” or “need assistance.” “Toileting disability” does not always co-­occur with dementia, and it affects a large number of people as they get older. Of course, it affects everyone when they are newly born and nonverbal. The apparent humanness of hygiene explains one of the commonest tropes about nonhuman animals and waste—­that they do not know how to manage it or have to be trained to do so. Dogs need to be “house trained,” and I have memories of using home signs to make our pets understand not to “go in the house.” Such signs are so widely known and practiced that,

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while they are likely new to a puppy, which would interpret them as innovative home signs, they are learned techniques on the part of the humans, who may think they are unlocking some universal code behind pet development. For us, this included pointing to waste matter (communication through contact; other pet owners I have known actually rub their dog’s nose in it), raising our voices to say “No!” or “Bad dog!” (contrast), and taking them by the collar outside to convey where this is meant to happen (contact and contrast). Cats, famously, know to use litter boxes almost automatically, no communicative strategies necessary. However, I have known cat owners who complain about hair balls or other sudden expectorations, or about excrement left behind in moments of protest (when humans are away, for instance), and who use similarly nonsymbolic communication to convey their displeasure to their feline companions. One of the better known instances of apparent animal “misuse” of waste comes in the form of monkeys and other apes throwing their feces. This is something I admittedly have never seen, but have heard so many times, from so many sources, that I assumed it was true. In fact, at least one neuroscientist has explored this phenomenon in monkeys, or rather used it as a way to get at the origins of language abilities. Psychologist William Hopkins and his colleagues specifically argue that this shows the makings of intelligence and perhaps the origins of verbal abilities in Homo sapiens: “visitors to the zoo are sometimes treated to the sight of chimpanzees throwing objects (often faeces or wet chow) at each other or at them. What most zoo visitors do not appreciate is the rarity with which throwing occurs in non-­human animals.”23 Waste throwing is significant, for Hopkins and others, insofar as these monkeys are transforming a waste product into a tool, something to throw. Tool use and language use are often linked in evolutionary theories that try to account for the origins of one or both. It is therefore not surprising that Hopkins and his team have used magnetic resonance imaging (MRI) to see if there is left brain development (in what is known as Broca’s area) that could suggest that throwing ability offers a clue to the origins of linguistic humanity. Stool use becomes tool use from the right perspective. What Hopkins, Russell, and Schaeffer also offer, beyond speculation about origins, are some radical empiricist insights. That is, they offer an assessment of what nonhuman primates are doing when they throw things at people at zoos. In short, what appears to be the main reward for throwing is the simple ability to control or manipulate the behaviour of the targeted individual (ape or human). For example, in our laboratory, chimpanzees will patiently wait for strangers or visitors to approach and then will throw

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at them. They do not conceal their intentions and they will often stand bipedal and threaten to throw by cocking their arm with the projectile in their hand in preparation for throwing . . . The passers-­by can see this and will often try and negotiate with the chimpanzees to put down the projectile, or they will try to trick the ape by stopping, then dashing rapidly past the ape enclosure. This seems to be the reaction the apes hope to get from the humans and, in operant conditioning terms, is the only ‘reward’ the chimpanzees receive for throwing.24

Put differently, they are delivering a message. I think anyone who has had waste or food tossed at them at a zoo probably believes so as well—­that their caged counterpart used what they had at their disposal to formulate what Kohn calls a trans-­species pidgin, to communicate across an organismal divide.25 Whatever it means, it is seemingly about the relationship between captive ape and captive audience. Indeed, I am more interested in the fact, which Hopkins and his colleagues note, that this behavior seems to happen only at zoos. What makes it effectively a home sign is that it is not something that occurs in the wild and therefore not something nonhuman primates appear to have evolved to do, as it were, instinctually. It is therefore both practically innovative, in the sense of using what is at hand to accomplish a goal, and idiosyncratic to those primates one finds confined to zoos being continually stared at by strange Homo sapiens who need to learn a lesson, or stop being so loud, or stop wearing such pungent cologne, or give them food . . . It is hard to say what, if anything, this is meant to mean or, again, whether it means anything abstract at all. It might just be a spontaneous game of social relating. It might amount to no more than a game for zoo visitors too, albeit one with undeniable anthropological significance, since it seems to make clear that there is a dividing line between humans and nonhumans based on how we relate to our excrement. Whatever monkeys and chimps might be doing when they toss feces and other materials, it is surely true that some people have enjoyed thinking about and laughing at the practice for years. Typing “monkey throwing poop” into a google search quickly produces no fewer than 3.7 million hits, with the leading one (as I write this) being a 2017 article, posted on the American sports fan website SBNation, entitled “Chimpanzee throws poop directly into grandma’s face.” Included on the site is an image-­by-­image breakdown of the video and a description of the event, as if it were a play in a sports game. “Visitors to the chimpanzee enclosure at a Grand Rapids zoo got a lot more than they bargained for when a keen-­eyed chimp showed incredible

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accuracy to throw its poop right into an old lady’s face.” The writer finds this funny, obviously, which is hard to explain except that a taboo is being violated: poop is disgusting, another being’s poop is even worse, and for it to touch any part of your body, let alone your face, is the worst. More to the point, the source of the violation is a nonhuman being that, the writer suggests, is already giving messages that anyone could read and that “grandma” should have heeded: “visitors to the John Ball Zoological Garden thought the chimp was putting on a display, but he was clearly very upset. Any time you see a chimp doing this, it’s normally a sign something is about to go down—­and down it definitely went. Within seconds, he flung poop with an underhand shot nobody saw coming.” From an existential point of view, that of zoo visitors, grandmas, and internet commentators alike, coming in close contact with waste is meant to be disturbing on deeper levels than perhaps the chimpanzee intends. This was one of the famous lessons of anthropologist Mary Douglas’s classic Purity and Danger. For Douglas, part of what makes us human is that we look for order and look to manage any exceptions to that order, in the form of what she calls dirt. More broadly, Douglas’s perspective is linked to an existential and phenomenological tradition. When other primates throw hateful matter where it does not belong (for instance, in our faces), they expose the “thrownness” of existential dread that Martin Heidegger associates with Dasein, the self-­conscious being who is thrown into existence as an individual body, destined to die at some point, and aware of that.26 Our bodies’ constant functioning is testament to this fact, and the existence of feces that need to be excreted is but one undeniable example of our own finitude. In a sense, Jeanne, myself, and Charlie’s carers, as well as the whole educational and Medicaid apparatus of New York state, are set on filling Charlie with this same dread, of teaching him to move through the world as we do, on an anxious journey between toilets. We mostly always assume we will be in buildings that have one, or on foot or in vehicles on the way to one. When we are unsure of the location of the next toilet, when our body demands release, we are thrown again into this state, disappointed in ourselves or in the world or both. I pissed myself a few years ago. My younger brother was driving me home from the airport. I had been away for a week or so at a workshop abroad and had just landed back in Syracuse, where he lived at the time. I remember being relieved to be home, ready to see Charlie, whom I deeply missed, and eager to talk to Jeanne about all I’d seen and experienced, an in-­depth debrief that we normally do for one another after work trips.

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We were mere minutes from home when my bladder suddenly, strangely felt like it was going to burst. I was embarrassed, but also did not see a place we could stop anywhere in the New York countryside. Just as I asked my brother, in a panic, to pull over, as our dad used to do on long trips when we were kids, I felt the side of my right leg grow warm and wet. My stomach sank. I was in utter shock, still jet-­lagged, confused, and overly apologetic. My brother kindly gave me an empty soda bottle with water in it that I could dump in my lap and, upon empyting, could finish peeing in. We agreed to say I had spilled a drink on myself (which was at least half true) and never spoke of it again. I love him for that. I remember thinking how Charlie did that, all the time, with no shame whatsoever.

Thrown into bodies with bladders and sphincters we mark our journeys at least partly by and through excretion, not unlike animals marking territory, though inversely, for us, all trace is ideally extinguished. Feces-­throwing primates are, in this sense, showing that they are not thrown in a similar sense. At least, if they do feel their finitude—­and Heidegger thought they do not—­it does not seem to be related to how they release and manage their wastes. Or, just maybe, those primates are more invested in the dread their feces can cause others. If Charlie does not learn to be troubled by his bodily wastes, he is going to end up being taken care of in the same intimate way as now, other people taking him to go, helping him wipe, guiding him to wash. But those people may not love him as we do. That is the price of not being thrown but throwing, of refusing the invitation to experience the expected dread at having a body and being alive. At the same time, let’s say Charlie figures all this out, finds a way to be thrown in the way we are. Maybe one day he will stop using pull-­ups altogther, whether or not his language improves, having learned to manage his wastes anxiously and alone, ever in search of the next toilet. Even if so, well, eventually, inevitably, he will likely find himself back in pull-­ups again later in life. What will it like be for him, then, to go back?

Dismodern Care Ethics The demand that Charlie learn to be thrown by his bodily necessities, not to throw them at others, is very much related to assumptions about who we all are meant to become as adult humans, however temporary this

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achievement ultimately proves to be. Generative labor is about who people ought to become. The ethical demand to teach better habits in the present issues from anticipated futures. And home signs, from one perspective, are too tied to specific contexts in the present to allow for any future. Either they will develop into a more widely shared kinesic code, or the social contexts that nurture them will be no more. You can’t ever go home again, only culture and language live on, supposedly. From another point of view, all we do in life is pass from one home-­signing group to another, which begins well before and continues long after we may or may not have facility with language. As long as there continue to be social groups, as long as people get to know one another, to collaborate and calibrate, new home signs will form and take hold. My perspective on these issues has been shaped in part by disability theorist Lennard Davis and what he calls dismodernism. He associates this with a new ethics of the body, one in which each of us is somehow incomplete, in need of being cared for. Davis divides this into three areas, care of the body, care for the body, and care about the body. The first he associates with contemporary consumer society, where what I have called the semiotic guesswork of hygiene involves “the purchase of a vast number of products for personal care and grooming, products necessary to having a body in our society . . . the contemporary human body is incomplete without deodorant, hair gel, sanitary products, lotions, perfumes, shaving creams, toothpastes, and so on.”27 Care for the body Davis describes as healthcare and dependent care, which he characterizes as the largest sector of the economy in most countries. The generative labor expended to train Charlie to toilet as expected is linked with this, but also overlaps with the third dimension of dismodernist ethics: Here we must discuss the oppression of so-­called abnormal bodies, and the treatment of the poor with disabilities. My point is that with a dismodernist ethic, you realize that caring about the body subsumes and analyzes care of and for the body. The latter two produce oppressive subjection, while the former gives us an ethic of liberation. And the former always involves the use of culture and symbolic production in either furthering the liberation or the oppression of people with disabilities.28

In this penultimate section, I consider what it might look like to rethink how we care about bodies, such that Charlie’s dependency is not some tragedy but a chance for him to continue to relate to others through home signs. More than that, care about bodies, for Davis, offers potentially liberating possibilities to others in turn. This admittedly does not come easily for me.

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It goes against the experiences of my everyday life, my other life as the family “toilet tyrant,” where Charlie’s repeated rejection of hygienic habilitation is felt as a source of endless frustration and perpetual dread. Those feelings are arguably about the fear that he will continue to be dependent on others, but what if that is the ethics of the body, the relational way of caring about bodies, that he prefers? Davis uses his dismodernist intervention to call for a new way of caring about the body—­he would tend to agree with Charlie. The ideal he aspires toward is “not a hypostatization of the normal (that is, dominant) subject, but aims to create a new category, based on the partial, incomplete subject whose realization is not autonomy and independence but dependency and interdependence.”29 From a dismodernist point of view, “all Humans are seen as wounded. Wounds are not the result of oppression, but rather the other way around . . . The dismodernist subject is in fact disabled, only completed by technology and by interventions.”30 Consider the discussion of toilets and thrownness in the preceding section. In a sense, by attaching our excretions to toilets, we are incomplete beings who can be easily undone when a toilet is no longer available, out of order, already occupied, absent, or when the available toilet does not meet expectations ( Jeanne and I have both refused to use certain public toilets, or let Charlie use them, because they did not meet our standards of cleanliness). From Davis’s radical perspective, we the toilet-­addicted have chosen to remain incomplete, to have partial cyborg bodies always searching for our next toilet seat. Charlie is a cyborg too, of course, but his pull-­ups are always there, catching whatever he cannot or will not hold in. The toilet does not complete him as it does us, at least not yet. Davis does not elaborate much on what it does to people to take care of and care for other people’s bodies, but in a world where dependency is the rule, it would make all of us simultaneously carers and cared for. Davis’s take on care is broadly individualistic in its orientation, meaning it is not so much about the relations we form through care of, for, and about the body and the way that this changes us. An alternative, feminist reading of care sees caring itself as embodied, meaning it is almost like a skill that can be practiced.31 Maurice Hamington characterizes such embodied care as care ethics, which evaluates actions on the basis of the concerns and needs of others. The goal here is quite radical, but also fairly ordinary: a moral system that eschews a reliance on rules, on codes of conduct that exist external to a given context of care relations. Hamington draws on the work and writing of Jane Addams, a social reformer at the turn of the twentieth century and co-­founder of Hull House in Chicago, who was also an antiwar ally and

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correspondent of William James. Hamington defines care ethics in such a way that they would seem to demand forming home signs: An embodied ethic of care relies on experiences of the other and habits of caring to provide the corporeal resources for the possibility of empathy and action. Part of these corporeal resources are the caring knowledge and the habits of care: the subtle movements known to the body that express meaning through the eyes, facial expressions, and touch. These corporeal resources, built up through interpersonal interaction, are not lost on the caring imagination when the wider social environment of norms, rules, and laws are considered.32

Addams’s take on care ethics started from an emphasis on sympathetic attention to context, meaning that no one set of predetermined principles could work for every occasion.33 Melissa Anderson specifically mentions this in relation to ability: “Addams is careful to differentiate sympathetic care from what she rejects as the pseudo-­scientific approach to caring for others. She refers to it as ‘stilted,’ demanding the other to conform to the actor’s own wishes regardless of whether the other has the capability to do so.”34 If Davis’s account of ethics challenges ableist thinking about incompleteness, then a pragmatist and feminist approach to care ethics has the added benefit of suggesting that all care be thought of as ethical and relational. Care is not only a job or an obligation that people can do more or less well but one that can define how they see themselves and what they do. This is productively compared with the definition of care among anthropologist Lisa Stevenson’s Canadian Inuit informants; as she puts it, care is “the way someone comes to matter and the corresponding ethics of attending to the other who matters.”35 This certainly fits with some of the care workers whom I talked to and have come to know over the years. For instance, Jodie explained that her employer essentially had to make a completely different plan for each newly arrived individual, rather than rely on whatever approaches the person might have benefited from in other settings before. The context of their facility was just too different, too busy, too dynamic. Jodie formulated what sounds like a version of care ethics when we discussed toileting and hygiene. This came up when we talked about the help that older individuals require, who have difficulties with communicating similar to Charlie’s. While we spoke, after hours at her center, Jodie answered my questions, and I looked around, imagining Charlie going there in his sixties. It seemed smaller than his current classrooms, more crowded. I pictured him finding a corner, figured out which one, with a window to

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the parking lot, watching cars come and go and wondering if one was ours, come to take him home. My heart breaking, I turned my attention back to Jodie.

Many of their clients need help with toileting as well as showering, she told me, both of which can be challenging, as mentioned in the previous section. At the same time, Jodie insists that providing this help is also an invaluable way to show “love and compassion” to individuals, to show them who you really are as a caregiver. This happens by finding ways to communicate, even when words are not available, not only how to wash but how they deserve to feel about themselves. In Jodie’s words, “I try to have them do the more personal spots by themselves to give them more control.” This might require hand-­over-­hand redirecting or other alternative means of communicating in previously agreed-­upon ways, nonverbally. Each time, this sign work becomes more and more established, increasing levels of mutual comfort. This is about generative labor, about building senses of autonomy. Yet Jodie suggests that in these moments, when the individuals they work with are feeling especially vulnerable, you can both give them more control and show that the caregiver can be trusted. “It builds relationships,” she said. I am reminded of personal stories like those in the volume Disability Visibility, which offers several moving chapters on relationships and care. One, in particular, was written by Jamison Hill, who experiences severe myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). Among other things, this means he cannot make it to the bathroom to expend bodily wastes and needs to negotiate this with potential romantic partners, even with someone diagnosed with a similarly challenging condition. Our experiences differ. Shannon can briefly get up to use the toilet, bathe, and, on a good day, make herself a meal. I, on the other hand, have to do everything in bed—­brush my teeth, bathe, and use the “bathroom”—­a plastic bag for bowel movements and, for urinating, a dubious-­looking plastic container attached to a tube feeding into a bucket on the floor. These are not sexy things but are part of life—­my life and ours together.36

Hill explains how they worked past this and, in doing so, actually managed to build a greater sense of mutual trust. A similar sentiment comes from Doug, one of the American men (himself possibly on the autism spectrum) whom Aaron Jackson writes about in his recent ethnography: A few years ago, Doug hurt his back, which stopped him from being able to carry out many of the most cherished routines with the boys—­like

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bathing [his son] Nick. Because Nick is hyposensitive, he enjoys the sensory input from the water at bath time. Doug describes the quiet moment they would ritually share together at night before his injury, as he pulled Nick from the bath, wrapped him in a towel, and nursed him in his arms.37

Doug can no longer commune and communicate with his disabled son in this way, he explains, tears in his eyes, but he looks for other ways to be with him now, also in the bathroom where Nick hugs harder than he does anywhere else. Jackson shows, both with his own life as a caregiver and with the American male caregivers he sensitively and poetically writes about, that caregiving shapes moral horizons and lived experience in ways that can be both dramatic and ordinary. He concludes his book in alignment with Susan Wendell, who also argues that this way of being with disability, as Jodie or Doug describe it, also teaches people about broader values of interdependence.38 This seems to be the case especially when carers have to cultivate an “intimate space for communion”39 in those contexts which are ordinarily closed off by doors and moral standards of privacy. Being included in these hygienic rituals informs carers about a broader ethics of relationality that they bring to their own lives. Rather than think only about Charlie’s developmental trajectory toward autonomous toileting, a dismodern care ethics asks what it means for other people’s ethical development that we are part of his toileting. What does it mean for parents like Jackson, Doug, Jeanne and me, or for professional carers like Jodie and Gwen? Hull House–­style social reform projects aside, at minimum, care work around toileting forces sometimes very anxious, ethical reflection on the bounds and binds of self and other. Instead of seeing people like Charlie as on a fixed, linear track from dependency to independence (or more starkly, inhumanity to humanity), a dismodern ethics about the body encourages us to see everyone as incomplete, as thrown in some fashion. Care ethics, as I see it, goes further, insisting that Charlie’s habilitation is happening alongside the ethical growth of the people who work closely with him. Recognizing that home signs are part of this is meant to focus attention on the intentional communicative acts that people with diagnosed disabilities bring to these ethical encounters. There are unique and clever ways in which Charlie already does care about his body, but he does so by navigating relationships with ever more people, finding ways to be understood and to understand each time. Right now, with me, this includes going to the bathroom of his own volition sometimes, his pull-­up still dry, and then looking, searching my face for a sign of pride, for a smile and that familiar, sonorous

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approval, “Charlie, GOOD job, I am sooooo proud of you!”40 That’s when he smiles back, hums, and claps his hands, shifting weight from one foot to another in a dance that makes it hard to get his pull-­up back on right away. Learning to make a habit of toileting, making it wholly private as we want to do, means losing this excitement, this meaningful exchange of mutual joy, forever. Why would he want to give that up? Why would I?

Cacas Ergo Sumus As Jackson writes, “the histories that we carry with us not only disclose things as experientially mattering in particular ways but also provide important grounds upon which we understand ourselves, make new meanings, and press ahead into new possibilities.”41 Inspired by him, I see that the waste histories I carry with me are about caregiving relations. My oldest memory is of having my diaper changed by my mother. I remember lying on the floor of our old house, staring at the ceiling, legs in the air. I remember feeling safe, warm, comfortable. Is that how Charlie feels with us? I remember my grandmother’s small house, in Auburn, New York. Strangers live there now. It had a toilet upstairs, adjoining the space where her parents, my great-­grandparents, lived for a time. We kids used to play in that upstairs area during family get-­togethers, and so that is the toilet we would use. I remember I hated it. The carpet was fluffy and had a loud color, like turquoise. Whatever it was, it matched the toilet lid cover. The weight of that cover prevented the toilet lid from remaining tilted upward for very long. You could place it at a right angle and it would stay for a few moments, but would eventually crash back down. I forgot about this every time, lost in my entrained toilet habits (lift lid, pee, flush, wash hands). So I would lift the lid to urinate and then panic in shock and shame as it came crashing back down seconds later, interrupting my stream. I must have pissed on the fluffy lid of that toilet and the surrounding carpet a dozen times, each time embarrassed and ashamed. My grandmother must have cleaned up after us each time. She said nothing. Now I realize that she probably cleaned up after her elderly parents in a similar way. And when she got old enough, and suffered from dementia, then her husband, her children, and health care professionals cleaned up after her.

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The refrain “Cacas Ergo Sum,” which gives this chapter its name, is a playful bastardization of René Descartes’s cogito, ergo sum. For Descartes, all doubt and all reason begins with our ability to think (using language, of course) as individual selves, individual minds. As many people have noted, such self-­awareness is also linguistic awareness, it is an awareness that sign and object differ—­the “I” who is thinking is different from the medium they are inevitably thinking in. Such semiotic reflexivity is often touted as the critical boundary dividing language from nonlanguage, and by extension dividing humans from nonhumans, adults from infants, and competent subjects from impaired subjects.42 It is worth considering the stakes involved here. This seeming affinity between thought, ethics, and language, stemming from ideological assumptions about all three, has been critical, not only for the Protestant Reformation, but for the rise of industrial, wage-­labor capitalism and the social contract of the modern state.43 At one extreme is the ideological figure (most often assumed to be a wan chum) whose mastery of language bespeaks, and seems to make possible, mastery of their baser selves, specifically, emotional impulses and irrational biases. As a result “he” can execute reflexive moral judgment and critical reason, that is, become someone who can take a stand or form a positional stance (see chapter 1). At the other extreme, someone who is imagined as primarily or exclusively communicating through the body—­through kinesic facial expressions, manual gestures, nonlinguistic vocalizations, or bodily movement—­would lack all the critical ingredients necessary for societal membership, ownership, and citizenship. Such idealized autonomy, of reason and will, is also caught up in our ability or inability to shit well. This is certainly the case in the two societies where we have been raising our son, where it is deeply concerning to the state that he needs help toileting at sixteen. At times this has meant our use of diapers was subsidized (more effectively in London than in Binghamton), though now we buy them in bulk online. But what it always means is that, every year when we write up individual life plans for Charlie—­and in theory “with” him—­we make clear that he needs one-­to-­one care at all times. The problem is not just that he needs help going, but that he needs help caring about where he should go when he feels the need. This is ostensibly necessary so that he does not soil himself and, potentially, make a mess and pollute or offend others. It is also so that he will learn to care about these matters, by being redirected, led hand over hand, guided and goaded with home signs; so that he will care about his body in a certain way, as incomplete, thrown. But because one-­to-­one habilitation and help like this is expensive and labor-­intensive, his toileting determines a great deal of what his life will consist of, how autonomous, how expensive, how incomplete.

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“Cacas ergo sum,” “I shit, therefore I am,” is also meant as an attempt to gesture toward an alternative way of caring about bodies, in Davis’s terms. Instead of caring that people like Charlie can take themselves to the toilet, we might care instead that they are forming relationships with other people, including forms of communication that help them better understand one another. This would be a care ethics where helping others to go is seen not as an unfortunate tragedy, but as an alternative ethics of the body, one that favors developing flexible home signs with others over developing entrained, unconscious habits alone. Rather than “cacas ergo sum,” shitting to create an autonomous I, this would be more akin to “cacas ergo sumus,” “shitting to create an us,” to form mutual sympathy (see chapter 4). That “us,” that sum-­us, is not likely to be agreeable all the time, for everyone. But it will be open to negotiation, for which home signs might be critical in some contexts. Care ethics does not do away with the challenges of caregiving, but it does help reframe them. It helps us to see all caregiving interactions as ethical in nature, as involving the development of all people in the interaction and not only those deemed dependent, incomplete, targeted for habilitation. It also helpfully takes discussion of caregiving away from parent-­child relationships, which are overrepresented in public discourse and which can distract from the need for broader social, political, and economic changes.44 In her book Care Work: Dreaming Disability Justice, Leah Lakshmi Piepzna-­Samarashinha talks powerfully, among other things, about creating “crip-­only spaces” crafted around mutual aid. Toileting can create challenges here as anywhere. She writes: Solidarity with other crips also means the realities of an inaccessible world and cross-­ability access. If I am chronically ill and don’t have the energy/ strength to lift you onto the toilet, that doesn’t mean I  am a bad ally. There’s also the reality that sometimes we all need care, simultaneously.45

We do not live in a crip-­only space, but I can relate to this all the same. Sometimes Jeanne and I are tired, we are sad, we are hungry, we need to go to the toilet ourselves, and we cannot aid Charlie when he needs help in the bathroom. Davis points out that all of us can be incomplete, and Piepzna-­ Samarashinha that we can all be hit by reality, simultaneously, we can all be thrown by our needs in ways that affect how we relate to one another. Charlie clearly has his own ethic of the body, his own way of caring about his body and other people’s. This includes some interest in privacy, more than he used to have (he now shuts the door when he bathes or uses the toilet, inviting us back in only when he is done). But Charlie’s way of caring about bodies never precludes the need for others to help him out, not yet.

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I am writing these words, right now, in pajamas on the bottom steps of our apartment in Binghamton. It just became Saturday, it is 12:01 a.m. on August 4, 2018, and Charlie just refused to stay in his bedroom. He is protesting bedtime again. On his way downstairs to the living room area, I coaxed him into the bathroom. I knew he either had to go or had already gone. I feel guilty because I did not try hard enough to get him to sit on the toilet when the timer on my phone went off a half-­ hour ago. We’ve used timers for several years to remind ourselves to get him to sit on the toilet, hoping he would develop the habit on his own. I feel irritable because he resisted going when I asked him, which he does more at night. Charlie was annoyed with me, and after I got him into our small bathroom, he showed it by refusing to pull his pants down, which I did for him. Then he refused to either sit on the toilet or to help undress himself. Seeing that he had peed already, I tried to get his sagging, slightly yellowish pull-­up past his feet, which were fixed firmly in place as if bolted to the floor. I wanted to throw it away and put a new one on, to start the process over again. As I worked his pants over his feet and adjusted a new pull-­up into place, he lightly punched the top of my head a few times and yanked my hair, hard enough to sting, not hard enough to remove hair from my head. He is not trying to hurt me, really, he is trying to say, this is not the way, I don’t like this. There are better ways, Dad. It is later now. In the end, he came back up at 12:18 and led me back upstairs to lie down. We did a lot of this yesterday, we’re going to do it all again tomorrow.

What worries us about Charlie’s future, if he continues to use adult diapers, if he continues to need to communicate closely and openly with others about his hygiene (rather than implicitly and at a distance, like many of us), is that this will require ever more people to participate in his daily bodily routines. Eventually, when we are no longer able or no longer living, he might be entirely dependent on future strangers whom we haven’t met yet, who might not even have been born yet, who may not love him, and who may be ill-­trained, underpaid, or unmotivated to understand him. In other words, we would be counting on his ability to continue to express himself and connect with others, to innovate ever more home signs in these unfamiliar contexts. We would need to hope that these future carers will get to know what he means, perhaps come up with home signs of their own he can learn. Any worthwhile future means trusting that he and they will find a way, beyond and beside language.

Mmmmmm

I love words, I swear I do, but God, they are everywhere. Charlie is not silent, he makes all kinds of sounds with his mouth, with the people and equipment around him. And yet there might be five words for every one sound that Charlie makes. One example is “mmmmmm,” which seems to have all kinds of meanings for him. I say “seems” and “for him” because we don’t think that when he says “mmmmmm” during a bath (such as he is having right now, as I write this) or “mmmmmm” during a meal (which he was doing two hours ago) that he is necessarily trying to tell us something.1 Whatever Charlie might make of “mmmmmm,” the technical term for just that one sound is syllabic voiced bilabial nasal continuant. Five weird words to stand in for only one of his sounds. It’s just not a fair fight. Then there are the words used to describe who he is, though in practice these are often shaped by ableism, which means they are often more about who he isn’t and will likely never be (see the preface). I’ve used terms like “autism spectrum,” “nonverbal,” and “alingual” to describe Charlie, but normally that only confuses people. It takes a few minutes and more words for it to sink in that he has no language at all as they understand it, normally while they press me further: “ Sure he doesn’t speak, but he uses sign language, right? Like Deaf people.” . . . “No? Oh, so he uses his tablet to communicate. I saw that on a TV special.” . . . “Oh really, not that either? Well, I’m sure he understands what you say.” . . .

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I think I know why this happens. Both in ordinary interaction and in academic scholarship, the use of words is elevated, celebrated, sacralized above all other forms of communication. English speakers might routinely say things like “words fail,” “actions speak louder than words,” “talk is cheap,” or “that goes without saying.” We might even declare that we find ourselves “at a loss for words.” Nevertheless we say all of these things, as if words could be made to express anything, even the very limits of language. Academics, my people, are inveterate lovers of words. Sure, sometimes they say things like: “Language is not all; it does not go ‘all the way down’”;2 or “Language cannot do everything”;3 or “You don’t live in language and words for very long before the object comes back once, before a foot is suddenly missing. Before the real falls down on your head.”4 I especially like that last one. Nevertheless these scholars write all of these things, and people read them and perhaps feel, when they do, as if the words represent something beyond language, something ineffable. And who am I to judge? It just took me a whole book to explain what I could get across, probably better in some ways, if you spent a wordless afternoon with Charlie and me. While in graduate school at the University of Michigan, I spent a lot of time trying to come off as cleverer than I was. That was probably the biggest challenge I faced before Charlie was born, which in itself is pretty wan chummy. Even so, I was new to academia and felt like an impostor much of the time. In a student-­led seminar on semiotics, I once asked, trying to be provocative, why the philosopher Hilary Putnam chose to use “H₂O” to refer to the essence of water in his essay “The Meaning of Meaning” (1975). I think I was trying to suggest that there was always a realist excess that could never be perfectly grasped through symbolic reference. Signs like chemical formulas only trick us into thinking that they are referring directly to things, in an unmediated way. In response, Rick, also a wan chum and recent PhD from the University of Chicago, told us a story. He said that he’d once heard someone ask the linguistic anthropologist Michael Silverstein the same thing during class, why depict the essence of water as “H₂O”? Reportedly the professor spat in his own hand and then held it out for others to see, “because Putnam couldn’t just do this.” I thought that what Rick was getting at, with the help of an allegory about Silverstein’s metaphorical spit, was that symbolic representation is not always the ideal means of communication. Sometimes direct contact and contrast could work better, but it is not always available.5

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I clearly think that there is something to be said for trying to write and think about what cannot be said. The problem is that language is routinely accorded supreme importance, as if it were the key to participating in the privileged club of Homo sapiens and the best way to recognize the humanity in others and ourselves.6 This becomes clear even when authors are ostensibly working at the limits of language. For instance, according to Akira Mizuta Lippit, in a book otherwise at pains to acknowledge the complexity of nonsymbolic communication, “without language one cannot participate in the world of human beings.”7 To be fair, Lippit’s focus is on nonhuman animals, not disabled people per se. But if we follow Lippit, Charlie’s world is equivalent to that of a newborn infant or a nonhuman animal, but whatever it is, it is not a world of human beings. Some moral philosophers would likely agree, but that misses how Charlie and his caregivers, whether professional or personal, make it their everyday business to participate in each other’s lives. If this is not a world of human beings, then what is it? Then there is João Biehl, in a book that otherwise sensitively troubles the supremacy of writing and speech as means of communication: “the only way to the Other is through language.”8 If we follow Biehl, Charlie’s otherness might be impossible to grasp, completely insurmountable to everyone, maybe even to himself. To be fair, Biehl’s focus is severe societal neglect, especially as interpreted through the words and experiences of Catarina, a Brazilian woman with mental illness. In many ways, in fact, Catarina’s exemplary presence in Biehl’s book inspires my own attempt to be faithful to Charlie’s preferred mode of communication in this one. At the same time, as with other accounts of suppressed and subaltern voices, there is a tendency in Biehl’s book to disattend to nonlinguistic lives. Biehl does mention one mute and blind woman early on in his discussion of the settlement of Vita, a woman “the size of a child, completely curled up in a cradle . . . relatives hid her in a dark basement for years, barely keeping her alive.”9 This helps him to explain what he means by “zones of social abandonment” for the unwanted. But that mute and blind resident of Vita, the place, is not the focus of Vita, the ethnography. The highly literate and verbose Catarina is, because for Biehl the only way to the other is through language. Biehl and Lippit are in good company. Being able to speak is widely assumed to provide the necessary conditions for being a good person or doing anything of value. Some biologists even suggest that the ability to use language is directly responsible for the fact that many human societies choose to care for the sick, old, and disabled, while many animals supposedly do not.10 So when human scientists do go to the edges of language, it is

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most often just an excuse to heap more praise on the center. For centuries scholars have been excited to recover “wolf children” who never learned to speak; meanwhile, the captive gorilla Koko or the young Helen Keller become household names and their struggles to overcome communication deficits are taught in grade schools and debated at academic conferences. That would be the normal fate of “mmmmmm,” to be reified into nothing more than the curious output of what Julia Kristeva called a “pre-­symbolic subject,” a beguiling other who is entirely outside of language and thus may only ever remain a “theoretical supposition” for those of us who do speak.11 Ironically, and irritatingly, people who speak badly or not at all are often selected as helpful curiosities to pose questions about people who speak well (and show how special they are by comparison). James Berger argues that this is an inevitable outcome of an overblown obsession with language. “To learn language is to gain everything,” he writes, “to become cognizant in all recognized ways.”12 But to credit language with so much power also amplifies what Berger considers the sacred domain outside of language where, by extension, one is in danger of losing everything, of not being recognizably cognizant. This sort of interest in the outside of language can be fueled by fear or fascination, but posing things in this way helps explain why the entire recorded history of language reserves—­or claims to remember—­a space for an other of language, for an alterity that can be heard only before language or after language or outside of language or in the breakdowns and impairments of language. It reserves this space of alterity, desires it, and is terrified of it.13

In fact, if one looks through the vast literature on nonverbal and verbal behavior, pragmatics and cognition, the evolution of language and the brain, researchers can’t get enough of disabled people (and animals as well). People diagnosed with aphasias, with brain damage, with dyspraxia and autism are routinely called upon in theories about the emergence and development of symbolic thought and representation for the whole species. Writing of this sort is part of what Agamben calls “the anthropological machine,” the purpose of which is to distinguish and exalt that which counts as human. Language is central to these twin tasks: “in identifying himself with language, the speaking man places his own muteness outside of himself, as already and not yet human.”14 The anthropological machine was there when biologist E. O. Wilson sought to outline the new field of sociobiology: “aside from its involvement with language, which is truly unique, [culture] differs from animal traditions only in degree.”15 It was also there when Harry Stack Sullivan (mentioned in chapter 4) sought to outline a

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new interpersonal approach to psychiatric care: “excluding the outcomes of hereditary or developmental disasters to which the term, idiot, is correctly applied, the individual differences in inborn endowment of human animals are relatively unimportant in comparison with the differences of the human animal from any other species of animal.”16 For many scholars, linguistically and cognitively disabled humans and nonhuman animals are thought to raise questions about where “the human” begins and ends, whether in terms of generic skills that are meant to be exclusive to our species, like language, or the literal beginning and end points of a specific human life.17 Outside of theory, in general conversation the lack of speech is often used as an analogy for lack of understanding or ignorance in general. English allows me to write, for instance, that when I first introduce Charlie, many people are rendered speechless, that is, they are dumbstruck. These are metaphors that make rhetorical use of disability. They fall flat when someone is well and truly dumb, that is, mute. “Dumb” is an old word for alingual, and not one most people prefer today. I use it now in part to draw attention to the fact that, over time, words to describe people like my son have been appropriated by neurotypical people as insults. A century ago, during what we moderns often think of as a ruder time, there would have been many possible labels for Charlie, including “moron,” “idiot,” “imbecile” . . . Today we like to think it is kinder to apply less precise descriptions (“nonverbal,” “autistic”) and only use those old-­fashioned labels as terms of abuse for people when they say things we don’t like (not because they cannot say anything at all). But Charlie does say something. He says “mmmmmm.” My point is not that this, that “mmmmmm,” is worth comparing to language, but rather that it is something beyond and beside language that is worth taking note of on its own terms. It is not something to merely classify as either a home sign or a syllabic voiced bilabial nasal continuant, nor to appropriate as an aberrant exception that proves the rule that we are really, essentially a symbolic species. We need to sit with it as it is, no more and no less, and stop wondering how to use it to give glory to language. Mmmmmm. mmmmmm mmmmmm mmmmmm

Mimmmmmmetic Faculties OK, we can sit with it. But what is it? What is “mmmmmm” if it is not something to classify, to categorize somehow?

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Perhaps the best way to account for “mmmmmm” is to link it to imitation, or the mimetic faculty. I have said throughout this book that the representational tools at Charlie’s disposal are primarily, and it would seem exclusively, based on contact (spatiotemporal connection) and contrast (similarity/dissimilarity). The latter is, by some accounts, entirely about imitation, attending to things as if they were the same or different.18 Charlie’s mimetic faculty is busily at work, we know, because he routinely does things after having seen us or other people do them. Jeanne and I definitely say “mmmmmm” sometimes, for instance, while eating, while reading, while watching something interesting unfold. If we take “mmmmmm” seriously, then, we might dissolve it into a broader set of behaviors that come from him observing us and us him. It could signal his participation in our lives, or, more than that, his investment in our otherness, in mimicking our movements and sounds in ways open to him. In chapter 2 I mentioned that “tickle” might be the only word Charlie says, but I also complicated that a bit. I can say more now, in comparison to “mmmmmm.” Words exist not as isolated units, whether symbolic or not, but as parts of an irreducible and layered system of phonology, grammar, semantics, and pragmatics, that is, language. Phonologically, I have already said that Charlie does not say “tickle” exactly but something more akin to “iggle” or “diggle.” As an aside, generally speaking, the “t” and “k” sounds that Charlie does not pronounce in “tickle” are learned later in language development than the “d” and “g” sounds that he does use. That’s why very young language learners of English often go through a phase when they would say “doy gar” instead of “toy car.” This is because the voiceless sounds people learn later, such as “t” and “ck,” are alveolar or dental consonants pronounced using the front of the mouth instead of the vocal cords. That means, for instance, that Charlie cannot currently come close to saying his own name. Charlie does not make voiceless sounds, as far as we can tell, and he seems to vocalize only and exclusively using his vocal cords. His sounds are all nothing but voice, all the time. To put it more precisely, something like “mmmmmm” would be all about voicing contrast, since any meaning it makes possible comes from the difference between voicing it and voicing something else, like “iggle.”19 Semantically, we might assume that “iggle” has an equivalent reference to “tickle,” given that it co-­occurs with situations we label in this way. But Charlie does not only say “iggle” during tickling play.20 He also does not always utter “iggle” during tickle games, as I mentioned in chapter 2. Semantics depends on grammar for exactly this reason, to help give order to how we talk in a way that appears to free conversation from context altogether (though it is never completely untethered,

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as sociolinguists and linguistic anthropologists remind us). This is what is so weird about the idea that Charlie could say only “tickle”—­that a person could be functionally alingual but for one word. Grammatically, this would be like imagining an ocean that produces only one wave—­with all that the deep cognitive infrastructure that is needed to hold up symbolic language, to distance it from contact and contrast-­based representation, how could it produce one word and yet fail to generate hundreds upon thousands more? But, by that same token, it is equally strange to imagine that “iggle” is not at all meaningful to Charlie, that is, not part of his communicative repetoire, as if it were the same thing as a random natural signal like a yawn or belch. Charlie’s “iggle” may stand for many things, but what all of those uses have in common are familiar social settings of caregiving and sympathetic relating (see chapter 4). Of course, “mmmmmm” might not be a word, the only wave of a quiet ocean, any more than “iggle” is. But neither are words as ideal as they are sometimes made out to be. Imitation can make words seem a lot like “mmmmmm,” for instance. There is a common American joke I’ve heard since I was a teenager, that if you say a word over and over again it starts to “lose all meaning.” This is the sort of seemingly profound thing that adolescents might say while getting recreationally high: “Pencil. Pencil. Pencil. Pencil. Pencil. Pencil. Pencil. Oh, wow.” It’s not that words have no significance as a result of repetition, but that their referential function—­the ability of “pencil” to metaphorically call to mind a writing instrument—­is downplayed with each repeated utterance. Repeating the word allows its poetic, sonic qualities, as a vocal product, to come to the fore, as if it were all voice and no symbol. Anthropologists Adam Seligman and Robert Weller point out that repetition of this sort is often used in religious ritual for similar reasons.21 They go even further to say that this brings people together, yanks them into a shared world, moves them to feel the here and now in a compelling way.22 Thought of differently, mmmmmm also involves a form of pure repetition, as in mm . . . mm . . . mm. And, if “mmmmmm” is no more an official word than “iggle,” it does become part of social interactions through almost ritualized imitation. When Charlie goes “mmmmmm,” Jeanne and I normally go “mmmmmm” back to him. Call and response. Maybe that is why he does it, because we reinforce it unknowingly through the “law of effect” (chapter 3) or because he likes hearing it echo back. Sometimes he has me lean in close, my mouth pressed right against his ear, and say it so that it echoes in his head. Maybe, then, it provides some recognition that he is heard and is a pleasant sound to hear at the same time. Mere mimesis could be the critical ingredient for sociality, as Seligman and Weller argue, but in a more negative light, it is behavior barely on the cusp

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of self-­reflexive representation (that is, awareness that a sign is a sign) and therefore very far from supposedly authentic selfhood. For René Girard, the mimetic faculty was dangerously deindividualizing, not because it is more natural or prelapsarian, but because it taps into deeply held social demands that he relates to sacrifice and destruction. As Nidesh Lawtoo puts it, with these darker theories of the mimetic faculty, widespread in Western metaphysics, states of psychic confusion between self and other(s) tend to mask themselves under a panoply of different conceptual personae . . . emotional contagion, enthusiasm, crowd behavior, and psychic depersonalization, but also compassion, sympathy, mimicry, automatic reflexes, hypnotic suggestion, hysteria, trance, participation, and identification.23

From this approach, the other side of language—­and the self-­conscious and self-­possessive awareness it makes possible—­is not just inhuman, but also creepily undemocratic.24 For many scholars I’ve read and professional schoolteachers and language instructors I’ve met, not to mention the school districts of South London and of the Southern Tier of New York state, the problem with nonverbal or natural communication is that it provides no ideological guarantee that there is a full-­fledged subject at work. Only language can supposedly do that. If I were to hold up “mmmmmm” as something Charlie is imitating or asking to be imitated, that might only raise more questions for them. The mimetic faculty, as a species or cousin of nonverbal communication more broadly, is just as bedeviled. More specifically, worries over mimesis are associated with the fear of what it would mean to have nothing but “natural language” or “natural meaning” and a corresponding attachment to the dichotomies demanded by a model of distinctly human language, cognition, and ethics. For critics of the mimetic faculty, it is important to maintain a distinction between the merely mimetic and conscious innovation or deliberate action. To lose this distinction raises deeply political and ethical questions, which accounts for the historical association between a loss of individuality and, for example, the rise of mass violence and totalitarianism. Put differently, “mmmmmm” might represent the extreme limit of home signs, a reminder of the ineluctable materiality—­and hence contingency and imperfection—­of all thought and language.25 There are clearly limits to what people can accomplish with home signing alone, which is part of what makes them troublesome. This is important to note because it helps explain one reason, beyond an ableist attachment to human exceptionalism, why social scientists have been generally slow to acknowledge

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the relevance of home signing: it does not readily translate into either individual identities or shared collectivities—­the prized currency of social analysis and political action. This accounts for some of the resistance to looking beyond language, since the stakes of humanity’s linguistic faculties seem so very high. Yesterday , Friday, November 6, 2020, I gave an invited talk on Zoom about disability to about a dozen colleagues and students in my department. I was surprised that many came, since we were all still nervously awaiting the final count from the presidential election. I am only just now starting to talk about disability publicly in scholarly venues as some kind of authority on the subject, which still leaves me feeling like a fraud or a sellout; either way I am exposed. After the talk I felt energized from the social interaction, still rare in quasi-­lockdown COVID-­19 conditions, and answered a lot of questions by veering more and more into discussion of Charlie, which was not the subject of the talk. Someone commented, maybe it was my colleague Doug Holmes, that the lives of people like Charlie are really full of joy, in a sense that goes beyond limiting representations of disability (which had been the critical focus of my talk). I agreed and put it more or less like this: in our society Charlie can never be converted to a religion without it being considered insincere, never vote without the appearance of fraud; never work for a wage without it being tantamount to indentured servitude; never have a physical relationship with someone else without it being legally rape. But he can also never be heartbroken by any of these going wrong.26 When I want to feel better about his future, I told the Zoom gathering, I figure that he can live like a celibate, epicurean, heretic-­hermit of means, who never works a day in his life and will never have to feel troubled by lost elections, possible damnation, or unrequited love. Here’s what I did not say on Zoom: all that costs money. In my head, I am ashamed to admit, I associate making enough money to pay for his epicurean lifestyle with writing more books like this one, with getting more or rather any academic fame, getting promoted further or getting new and better job offers. These words, any words I write that gain me further privilege, are ultimately for him, I tell myself. That might be more wan chum bullshit, but it motivates me in ways I am not proud of and that do not make good material for polite academic talks.

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Nonverbal, nonsymbolic gestures and forms of expression are significant in part for how they challenge dominant, ableist, audist, distantist ideologies about secure, private selves and clearly articulated collectives. In the form of home signs, the kinds of sign work that care situations reveal raise the stakes and intensify the gamble of interpretive actions, the practice of which will never make one perfect. This is so because it involves not only knowing what someone means but also whether they might mean something or nothing at all. This is brought clearly to the fore with the historical and institutional entanglement of killability and kinesics (see chapter 1). Jeanne and I know there are other people like Charlie in our community, in our country, in the world. We see them every day when we drop him off at or pick him up from school, when we attend local events for people with special needs. At these places we may gather but, from one point of view, are not together. We do not know one another personally and this is largely because forming groups, political or otherwise, normally means using symbolic communication. While only some nonsymbolic signs involve direct, skin-­to-­skin contact, they are all bound to bodies, their positioning and presentation, and are thus dependent on context, that is, mutually inhabited surroundings. There are many examples of groups formed in this way—­from concert audiences to club goers—­but they typically do not last. As powerful as communicative repertoires beyond language can be, you can communicate spoken or written words over longer spatial and temporal distances, you can translate them across radically different lifeworlds, even if something is inevitably lost in the process. Home signs are simultaneously more intimate and less iterative than symbolic communication. Though they can be picked up by multiple people and used in diverse settings, nonsymbolic repertoires are only really good for a specific “here and now,” shared between a particular “you” and “me.” For these reasons, there is no designated meeting place, on-­or off-­line, no website, activist organization, or representative body for people entirely without words, only for the people who look after and worry over them. Despite the centrality of home signs to human life and their clear significance among alingual people, nonverbal people have not received the same attention in disability studies or in disability justice movements as people who can strive for a collective and symbolic voice.27 All they have are people like me to write about them, often coming from the perspective of wan chum parents. For disability justice to move forward, I think people like Charlie need to be acknowledged as full-­fledged subjects, as Wolf-­Meyer argues, but I do not know what that looks like. What I do know is that it would make room for Charlie’s ways of engaging with others, which means

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being open to nonverbal communication and its strange possibilities. I suspect it means being open to “mmmmmm.” But is it true that home signs do not last? It depends. It may be that they do not last as home signs, but have a second life if they are reincarnated into more widely shared kinesic signs. Many theories of imitation place it just at or far below the level of conscious awareness, an almost degraded form of consciousness that collapses the distinction between self-­conscious control and automatic bodily reflex. Consider hearing someone say “mmmmmm” while eating something delicious, or at least while trying to make you think that they are. Even if this is a choice they are making, a sound they are deliberately producing, it is likely one they are making because they have heard and seen many people do the same thing since they were a child. And those people did the same, they ate or pretended to eat with an “mmmmmm.” Seligman and Weller make the same point about handshakes, a seemingly learned and culturally conventionalized form of kinesic behavior, yet one that could also spread just as easily through prereflexive imitation.28 That chain of imitation could potentially go back far into history or even prehistory—­which gives the lie to the notion that home signs are all destined to die as groups come apart, that only language is quasi-­eternal. Everything from the handshake to the hug, the shrug to the salute, the uppercut to the kiss might have started as innovative home signs, specific to small groups, only to become more widely shared, appropriated, and routinized into kinesic symbols for people all over the world. Those humble gestural histories are potentially lost to us, but that doesn’t make people like Charlie any less likely to be candidates for their co-­creation. But why is lasting the measure of a sign’s value, anyhow? If home signs are primarily innovated among idiosyncratic groups of people who know one another well, if they only last so long as those groups occupy space together on an everyday basis, that does not diminish the potency of this quirky semiosis as a way of relating. For most of us, it only makes these micro-­worlds feel that much more important, which is why we come up with insufficient and overly saccharine words like “home,” “family,” “love,” “companionship,” “care” that never seem to quite capture the intensity of our experiences with one another. Maybe none of it lasting is the point.

Mmmmmm Theory Maybe Charlie is imitating us—­the people in his life, not only his family—­ and is doing a version of what he has heard us do. He does do it a lot, though, certainly more than we ever have. Maybe Charlie heard us do

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it, but isn’t using it the same way (no repetition reproduces the original exactly, after all). For instance, he often does “mmmmmm” in the ordinary fashion, with his mouth closed, but he also uses his voice the same way with his mouth slightly open just as often, which—­if you try it—­sounds more like “unnnnnng.” As often as he uses it, maybe “mmmmmm,” in all its various forms, is a way for him to mark time, to make note of experiences as they happen, almost like a Buddhist exercise of attentive mindfulness. Maybe all communication for Charlie has the role of allowing him to take an inventory of what happens, to measure and process experience. Maybe that is what all our words sound like to him, or all they mean for him, and this is his impression of us talking. Maybe he’s boiled words down to their essence, into pure sonic resonance, pure voice, an affective treat for the mouth and ears. Maybe. That is all theory is—­maybe. Not for bell hooks. For her, theory is something that helps people to live. Theory is about having a body and not only having thoughts about what could be the case: Living in childhood without a sense of home, I found a place of sanctuary in “theorizing,” in making sense out of what was happening. I found a place where I could imagine possible futures, a place where life could be lived differently. This “lived” experience of critical thinking, of reflection and analysis, became a place where I worked at explaining the hurt and making it go away. Fundamentally, I learned from this experience that theory could be a healing place.29

How might “mmmmmm” help Charlie to live, whatever its origin in mimetic sociality? I truly hope he did not feel terrorized as a child the way that hooks did, but I know as his father that I have frightened him before (see auto-­ ethnographic interruptions in chapter 1 and chapter 5) and possibly made him feel unsafe. I know I might do so again, despite myself. Could “mmmmmm” give him space to live differently and heal? Stepping back from the situation a bit, from my own hurt, I see that when “mmmmmm” is voiced—­and it frequently is—­we know he is okay. Other sounds indicate stress (chapter 1), or a need for contact (chapter 2). Other actions indicate a desire for closeness (introduction, chapter 3, chapter 4). I said at the outset something that our former carer Jessie helped me understand, that Charlie is mute but hardly ever silent. From one perspective, “mmmmmm,” in all its forms (and there are many, varying by pitch, volume, length), is more than anything not silence. There are many things that silence could mean to Charlie. One of the most straightforward

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meanings of silence, in practical terms, is unexpected and unrequested social interaction. When we cannot hear him, when sounds do not come from his mouth or whatever device he’s carrying (chapter 3), we begin to worry and check on him. This puts interaction on our terms. Without jumping to more abstract conclusions about Charlie’s diagnosis as a person on the autism spectrum, in terms of lived experience, a break from the flow of “mmmmmm” and into complete silence immediately invites our faces, gestures, sounds, smells, size into his orbit. I routinely think of Charlie as a powerful figure. I have dreams and daytime fantasies in which he is a gentle giant, towering over others. Sometimes when I go running on the treadmill, this imagery pops into my head. For some reason it motivates me to run faster—­I imagine him twice the size of a house, stomping merrily across the landscape and me chasing after him. This might say something about how I perceive his effect on my own life as a wan chum caregiver. But in Charlie’s mind, we are probably the giants, stomping and crashing into his life at a moment’s notice, expecting things, demanding things, dragging him away from what he is enjoying with little to no warning. I cannot help but think of this as jarring, at the very least. But maybe it can also amount to a kind of sensory violence.

While sometimes “mmmmmm” is offered up for us to imitate, there are other times when “mmmmmm” keeps us at a distance. Maybe avoiding silence in this minimal way helps him because it serves to keep us at an imaginary tether, however slight it might appear, not too close and not too far. Charlie’s theory of the world, one that helps him to live, could be one where constant noise from his mouth creates an invisible boundary where he feels safe. Not an impenetrable one, more like a tent flap than a wall. He also knows that other sounds, other breaks in “mmmmmm” that are not pure silence, produce other effects—­the slap (introduction, chapter 4), for instance. Sometimes it happens that Charlie delivers a slap and we rush to his side, only for him to shoo us away again. Fort/Da (Gone/There), a Freudian would say, in reference to a game the originator of psychoanalysis observed his grandson playing, in which he made an object disappear and return and disappear again.30 It’s as if Charlie is making us appear and disappear at his will, playing with communication and co-­presence.31 At least one behavioral consultant we talked to warned us about this. She said that we should be careful, when trying to teach him basic sign language,

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to avoid the sign for “more.” She told me I could use her message without naming her individually or the agency she works for: I just want to say be careful with using “more.” You may even want to avoid this word at home. Because Charlie has such limited communication, you may see him start to sign more and you may not know what he wants more of. A lot of times, we will see kiddos escalate because they ask for more, but adults don’t know what they want more of so they just start guessing.

Charlie has not really taken up any of these ASL signs; he is still relying entirely on home signs of his and our co-­creation—­at least for now. But he already has a “more” in a sense, which is the slap I have mentioned throughout this book. It means “come attend to my needs.” Actually, to be more precise, it can mean more or less: “more of something I lack and less of something I’d like you to stop.” But it can also just mean something like “more contact with you now here.” Charlie plays with his home signs (chapter 4). If he plays with “mmmmmm,” too, it is not clear to us how. I have been hearing it as I have been typing this entire section of this book’s conclusion, and it does not appear to be for my benefit. If I stop hearing it, I go check on him. So whenever I do write and Charlie is allowing me to, “mmmmmm” is usually the soundtrack playing on repeat in the background. What Charlie does not allow to happen by voicing “mmmmmm” might be more important than what he does with it, or wherever it came from. Given that Charlie depends on others to be nearby to fulfill basic bodily functions, such as eating, drinking, or going to the bathroom (chapter 5), “mmmmmm” might be more like lived theory than hooks even imagined in her essay. “Mmmmmm” might be literally a sign of lived experience, since it would allow him in some way to mediate, if not meditate on, what for him is life-­sustaining signification, even and especially if it is not a home sign for Jeanne and me. As an empty vocalization, it would instead be something like the degree zero of home signing, the continual static of a dead channel, occasionally interrupted by an incoming or outgoing signal, by the excitement and uncertainty of connecting with others, but otherwise at peace. Maybe “mmmmmm” helps him to live.

Last Words I remember Charlie’s first and last words. When he was a little over a year old, I can’t remember exactly how old, he suddenly began

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speaking in the living room of our small apartment in Livonia, Michigan, a suburb outside of Detroit. I remember he said “brown” and “bear” in apparent reference to one of his favorite books, Brown Bear, Brown Bear, What Do You See? He also said “shoes” when we went to put them on to go out later that same day. I remember Jeanne and I were overjoyed. We didn’t know we would never hear those or any words again from him. It wasn’t long after that that he stopped speaking altogether. We kept rereading Brown Bear, Brown Bear to him for years anyhow. At some point, he began to chew the cardboard cover and rip out its pages. For years we would still find fragments of Brown Bear and other baby books in his toy boxes, or strewn about his room. What had been, for him and us, a book of words became an object with material affordances. What had been a plan for his life and ours lay in ruins.

Given how common language loss is supposed to be for people diagnosed on the autism spectrum, I wonder if everyone has memories of lost last words just as we do. They’ve learned to move on, as we have, to grieve and to embrace a new kind of communication that is not the same thing as language, that is both beyond and beside it in uncomfortable and exciting ways. Since I cannot give Charlie the last word about this book, I will say what he seems to think about me writing in general. Charlie’s favorite thing about me writing seems to be that sometimes it is fun to watch my fingers dance rapidly across the computer keyboard as I type. In those moments he does not like it when I momentarily pause to think, unless it is to wiggle those fingers more directly in front of his face, so it is best if I write in a steady stream of consciousness without taking a break. Like the modern novelists supposedly inspired by William James, I think to myself. That works better when I am writing these italicized asides, so in a sense these auto-­ethnographic interruptions are not only about Charlie. They are also literally for Charlie, at least they are when he sees me write them. Charlie’s least favorite thing about me writing seems to be when he finds the noise and movement of my fingers annoying. Sometimes this annoys Jeanne, too—­she says I attack the keyboard, as though I am angry with it. I do tend to type forcefully and irregularly, from a rippled“Tat Tat tat Tat tat” to a rapid-­fire TAT! TAT! TAT! TAT!” Sometimes Charlie wants my attention solely on him, to tickle him [chapter 2], play, or watch the screen that he’s watching instead

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[chapter 3], share a moment or in-­joke [chapter 4]. Sometimes I don’t like that he likes it or lets me do it because I should be getting him to sit on the toilet more regularly [chapter 5]. If I make it to the end of this book, it is with his encouragement and with his permission, as mediated through him. I also spend a lot of time writing when someone else is watching Charlie, or when he is keeping to himself and keeping us all at a distance (“mmmmmm”). I sometimes think that my desire to shape this book around his absent presence is a pathetic effort to be closer to him in these moments, other times a desperate retreat from my obligations as a caregiver for someone who needs so much from me and despite my fears about being an inadequate one. As I am writing this it is late December 2019. He stayed awake until 7 a.m. last night, unable to sleep. Maybe because of something he ate, maybe it was the fact that we haven’t been able to fill his clonidine prescription the last few weeks and it is out of his system. I can write more freely about him because he is with someone else. Soon we will be together again, and I will stop writing this book and go back to living with him, with our home signs, instead. If I’m successful, maybe others will write with Charlie in mind, too, with a new appreciation for their own and other people’s unique styles of communication. And if I ever write anything else after this, it is still this book. His book. Our book.

Acknowledgments

I have many people to thank. First and foremost, I thank the care workers who agreed to be interviewed for this project, some of whom we had the privilege to get to know personally through their work with our family. I greatly appreciate all the willingness to participate in the research and share their many insights; the book would not exist if not for their help. Everyone I talked to was generous with their time, but EN, RP, and AP (all of whom had previously worked with our son) also helped me better understand in new ways, through their many contributions, how Charlie has learned to express himself and grow over the years. That was a gift I didn’t expect. I also thank the staff and administrators at the Oak Tree and Pals programs at our local BOCES school, who advertised the call for research participants and recruited informants to the project. Both Michell Lipinski and Mary Al-­Sayed offered deeply meaningful editorial feedback for this book in its early stages. I cannot thank them enough, especially Mary, whose sage-­like advice to keep it “a little angry” gave me energy to finish the manuscript. Fabiola Enríquez Flores and Dylan Montanari at University of Chicago Press were both crucial in getting the book past various (normally self-­invented) hurdles and kept me sane in the process. I am sincerely grateful for the helpful criticism and direction I received from the anonymous peer reviewers of the text. You know who you are even if I don’t, but we all know how much you enabled this project to come to fruition. Thanks also to Lys Weiss of Post Hoc Academic Publishing Services for reading the entire manuscript so carefully and providing very useful editorial feedback prior to publication. Angela Vandenbroek and members of my spring 2020 “Graphic Anthropology” class discussed early approaches to the book involving images that I never used, but their suggestions and reactions were still useful in the beginning stages. The incomparable Justin Blue agreed to create art for the book. In the end, we couldn’t use it. It still means a lot, after being friends for thirty years, to finally get to work together on something other than X-­Men fan artwork or Eagle Scout projects. 189

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Different people read and commented on drafts of chapters, in pieces and in their entirety, and provided invaluable feedback, or at the very least sympathy with what I was trying to do. They include Anne Allison, Mara Green, Laura Johnsen, Julie Livingston, Bill Maurer, Megan Neal, Thomas Pearson, Jessica Santos, Rachael Sebastien, and especially Rae Jereza, who provided a great deal of helpful commentary on several chapters. A very early version of chapter 3 benefited from feedback from Laura Ahearn, Tom Boellstorff, Casey High, Erika Hoffmann-­Dilloway, Oana Mateescu, Mark Sicoli, and Matthew Wolf-­Meyer (though the best advice of all probably came from Randy McGuire, after the piece was published in 2012, who gently encouraged me to write more clearly). Thanks also to participants in a Binghamton brown-­bag talk held online over Zoom in November 2020. Not only did participants such as Doug Holmes provide support and encouragement, but they also unknowingly provided material for reflections in the conclusion. It is a rare thing (though perhaps not as rare as I imagine) that by commenting on a book-­in-­progress you inadvertently end up in it! Thanks also to participants in the 2019 and 2020 sessions of the “Futures of Waste” workshop at Rice University, including Jae Rhim Lee, Anand Pandian, Rychlee Espinosa, and especially Dominic Boyer, Joseph Campana, and Cymene Howe for organizing the discussions and inviting me to contribute a draft chapter. A more developed version of that same paper (which became chapter 5) was also presented in a shorter form at the Discard Studies conference at NYU in 2022. I could not attend in person, regrettably, but still received supportive feedback at a crucial time from both Elana Resnick and Sophia Stamatopoulou-­Robbins. While only Danilyn Rutherford saw much of this manuscript, I want to recognize the brief but productive exchange I had with her, Patrick McKearney, and Tyler Zoanni in 2021–­22. Their impeccable insights with respect to writing about disability anthropologically, and much besides, were critical to me when I was stuck somewhere in the middle and lost sight of what the book was about. For similar reasons, I thank all participants in the “Multi-­Spectral Ethnography” panel at the 2019 American Anthropological Association (AAA) meeting in Vancouver, especially Sabina Perrino, as well as Nick Bartlett, Bruce Mannheim (always nice to see a friendly face in the audience!), Cheryl Mattingly, Sonya Pritzker, and Leah Zani. I also thank all participants in the “Impossibility of Violence/ Writing the Disaster” panel at the 2022 AAA meeting in Seattle, who provided helpful comments and encouragement on the book project, then nearing its completion—­specifically João Biehl, Margaux Fitoussi, Angela Garcia, Andrés Romero, and Lisa Stevenson. Special thanks to Khalil Habrith. Bob Desjarlais deserves special recognition for providing

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commentary when I first began the book and as I finished it, including on two separate AAA panels over a period of three years. Most of all I thank Charlie and Jeanne, to whom I dedicate this book, as I did my first one. I could not do this without them. They really are this book, as I explain throughout. I only hope it ended up half as interesting, as funny, as beguiling, as intense as life with them has been and continues to be.

Notes

Pr eface 1. As Simplican notes, these authors and would-­be allies do not always call attention to what they are doing as a distinct form of analysis, with particular benefits and limitations; see Simplican (2015:14–­15). 2. On speaking (or writing) as resistance, see bell hooks (1989). She argues, in agreement with other feminist auto-­ethnographers, that speaking about personal experience can be a way of healing pain, one’s own and that of others, as well as of helping to make clear the realities of everyday privilege and oppression. 3. I take partial inspiration for this acronym from Robert Murphy’s self-­designation as an unmarked “White, Anglo-­Saxon, Agnostic Male (WASAM?)” prior to the onset of his physical disability (1987:103). 4. Following the radical empiricism of William James, anthropologist Michael Jackson argues, “We are continually being changed by as well as changing the experience of others . . . The “self ” cannot, therefore, be treated as a thing among things; it is a function of our involvement with others in a world of diverse and ever-­altering interests and situations” ( Jackson 1989:3). I’ll have more to say about James’s radical empiricism in the introduction. 5. For a more recent critique of this god trick in anthropological writing, see Harrison (2022). 6. Grinker (2021); see also L. Davis (2013). 7. Aaron Jackson (2021:7) and Thomas Pearson (2023:9). In this ethnography Jackson cleverly uses this as a reason to explore childcare among children diagnosed with severe disabilities among fathers, in particular, to see the difference that such gendered assumptions make in their lives. This includes greater awareness of the “unequal distribution of power and privilege” that underlies male-­focused narratives on disability care (97) and the “existential tension” that can arise from it (106). Pearson follows a similar course by using his experiences as a father to wrestle with the Boasian legacy of Margaret Mead in the discipline of anthropology. 8. Another term for this is “white nihilism,” often associated with despair about the world ending due to climate change, for example. For an anthropological take on this, see Song (2006). 9. The assumption that life is always supposed to get better and not be hindered at the start with misfortune is itself a privilege, as poor, Black, and Indigenous people of 193

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color are less likely to have such implicit optimism to be shattered in the first place, and are conditioned to rule out possibilites as life goes on (Erevelles 2011; Puar 2017; Schalk 2022). 10. For linguistic anthropologists, adopting different positions in and through discourse is known as altering voice (Keane 2000) and shifting footing (Goffman 1981; Irvine 1996; Agha 2005). Whenever someone writes or speaks about themselves or others, they send out messages concerning who is speaking (voice) as well as how and whether the speaker is aligning themselves with that voiced role (footing). 11. This is also known as poetics, after Jakobson (1960, 1980); see Mannheim (1986); Lempert (2008). 12. Fowler (1987). 13. Campbell (2022). 14. Clare (1999:7). 15. For this reason, Clare explains why it is insufficient to characterize the precarity he experiences as either/or, that is, as either socially conditioned through disabling norms and infrastructures, or as inherently possessed by dependent and fragile bodies. As difficulties with theorizing, writing, speaking, or any activity are experienced in a direct and bodily way, they lead to frustration that “knows no neat theoretical divide between disability and impairment” (1999:7; see also Rembis 2019). Clare is responding directly to the distinction proposed by disability activist Michael Oliver (1990, 1996), but in general many trace this to the World Health Organization (WHO). 16. hooks (1989:20); see also chapter 1 of the present volume. 17. According to long-­term studies, between one-­third and two-­thirds of those diagnosed with autism spectrum conditions “never acquire useful spoken language” (Carr and Felce 2007:780). Even for supposedly “high functioning” people on the autism spectrum, linguistic delays are common, and persistent difficulties with the pragmatics of language use may occur throughout their lives; see Ochs and Solomon (2004). 18. Shildrick (2009). 19. Pearson (2023:134) follows Rosemarie Garland-­Thomson in connecting neo-­ eugenic discourses around disability with a consumerist ethos that emphasizes individual choice in a competitive marketplace, much as my interlocutor did. 20. See Ginsburg and Rapp (2013, 2020); Rutherford (2020); Reno et al. (2021); Durban (2022), on disability in general in anthropology; and McKearney and Zoanni (2018) and Pearson (2023) on cognitive disability. 21. Klotz (2004:94). 22. Klotz (2004:94). 23. See Kittay (2009). This is a rhetorical trick used by some moral philosophers in order to raise attention to animal rights by diminishing the personhood of cognitively impaired people. I refuse to quote or cite them here. 24. P. Collins (2004:161); compare Hacking (2009). 25. Murray (2013:54). 26. Ginsburg and Rapp (2013, 2020); Rapp and Ginsburg (2010); Wolf-­Meyer (2020). 27. Latour (2004); Barad (2007, 2012); Haraway (2008); Bennett (2009).

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28. Oliver (2009); Seshadri (2012). 29. Derrida (2003:137–­38). 30. Agamben (2002). 31. Agamben (2002:37). While Agamben does not discuss disability explicitly, physical and mental incapacities provide recurring figures of the inhuman and other-­ than-­human against which the (impossible ideal of ) “ordinary” bodies and minds are imagined and enacted. Agamben does mention incapacities as important for the anthropological machine, especially the muteness of wolf children (2002:30), the deafness of ticks (46), and the blindness of moths (60). 32. See also Seshadri-­Crooks (2012). 33. The very organization of my book around my child and his struggles to be understood could be seen as problematically reflecting a broader obsession with The Child as sacred absolute, criticized especially by Edelman (2004). But see Kafer (2013) for a rejoinder, and Rapp and Ginsburg (2011) and Rutherford (2020) for further ways of complicating and imagining relatedness in terms of disability. Thanks to Rae Jereza for helping me to formulate this better. Rae also suggested I read Maggie Nelson’s The Argonauts, wherein she expresses a concern I can relate to. Nelson is troubled by books that are dedicated to illiterate children who are still infants or as yet unborn. In more ways than one this book is dedicated to Charlie, but he is not and likely will never be its addressee. I agree with Nelson that that only “underscores the discomfiting fact that relation can never be achieved in a simple fashion through writing” (2015:76). 34. They are also part of a broader interest in experimentation with the senses and with communication that come out of a a distinctly American pragmatic or radical empiricist tradition, which I discuss in the introduction.

Introduction 1. Goode (1994). 2. Rather than saying Charlie “has autism” or “is autistic,” I follow Melanie Yergeau (2018) in attempting to highlight this as a medical label rather than an ontological fact about a person. For an overview of autism as a diagnosis from an anthropological point of view, see Grinker (2007) and Fein (2020). 3. Quoted from Senghas and Monaghan (2002:75). See also Kegl, Senghas, and Coppola (1999) and Goldin-­Meadow (2003). In some ways my use of “home sign” could be seen to overlap with E Mara Green’s use of “natural sign,” a term that for her refers to an idiosyncratic sign that becomes relatively conventionalized and is “complemented by iconic and indexical strategies” (2022:22). I explain what I mean by “home sign” below, but without external means of establishing what any given sign means, or indeed whether it is a sign or not, its conventionalization will always be in question. Most of the home signs I consider here would qualify as natural signs that are radically immanent to specific social and material settings, to use Green’s terminology. 4. Kegl (1994); Kegl, Senghas, and Coppola (1999). 5. Gibson (1956:4). 6. On Keller’s biography as part of a wider genre of disability biography, see Nielsen (2018). On learning sign languages in other contexts, see Hoffman-­Dilloway (2011);

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Green (2014, 2022). In another sense, in the play Sullivan could be seen as bringing Helen into the world of white respectability, hence the role that Martha and Percy serve at the start, which could be understood to portray Helen as even more disabled given her apparent inferiority even when compared to the Black servant children. 7. The concept of “distantism” comes from Deaf Blind poet and activist John Lee Clark: https://​johnleeclark​.tumblr​.com/​post/​163762970913/​distantism. Adam Kendon (2004) wrote an entire book on gesture in order to counter the “audist” tendency to ignore or diminish its importance, though he does not name this bias as such. A complementary book countering distantism does not yet exist. The book you are reading certainly isn’t that book, but I hope it helps to lead in that direction. See chapter 2 for more discussion. 8. Thurlow (2016:503). 9. Tomasello (2008:23–­27). 10. Taylor (2017:52). 11. Taylor (2017:53). 12. Linguistic anthropologists have long contested these idealist notions about language, but such ideas are still very prevalent; see Briggs and Bauman (2003); and Cavanaugh and Shankar (2017). Though even for them, as Nicholas Harkness writes, “there is a seeming paradox . . . in our scholarly conceptualizaton of language: denotation is at once analytically central and methodologically decentered, both essential and marginal” (2021:11; see also Nakassis 2018). I see home signs as innovative and idiosyncratic in a way broadly similar to how Harkness and many scholars see glossolalia, or speaking in tongues. Thanks to an anonymous reviewer for helping me to better formulate this point. 13. On the politics of assigning linguistic incompetence to people, see Ochs, Solomon, and Sterponi (2005:567); and Rosa (2016). 14. See Goode (1994); C. Goodwin (2000); Chatterji (1998); and Fadaak (2013), respectively. 15. The idea that able-­bodied and neurotypical conditions are only “temporary” is long established within disability studies, associated with the truism that all bodies and minds, and thus all abilities, are always fragile due to the inevitability of aging, growth, and change. See, for instance, Scheer and Groce (1988); Davis (2002, 2013). This is also a privileged point of view, since it flattens differences when it comes to who tends to experience misfortune, as a consequence of systemic racial, class, gendered, and sexual distinctions; see Erevelles (2011); Kafer (2013); Puar (2017); and Schalk (2022). Put differently, not all bodies “fail” at the same rates or are expected to do so, and not all become sources of social reflection and consternation when they do (see preface). 16. Bates (1979); Lewis and Feinman (1991); Tomasello (2003, 2008). 17. Mead (1934:79). 18. For a creative reappraisal of Mead’s view of communicative development, see Andrew Lock’s The Guided Reinvention of Language (1980). Lock also offers examples of infant-­parent observations that could be categorized as home signs, were he to consider comparing nonlinguistic infants with nonlinguistic deaf persons. 19. M. Nelson (2015:36). On nonverbal communication with elderly patients in a bilingual Montreal setting, see Wolfson (1991).

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20. Generative linguistics, after Chomsky (Wharton 2009), in ways similar to structural anthropology, attempted to abstract formal codes from their messy expression through actual mouths, hands, postures, and faces. For a review and critique of “the brain” as it has been conceptualized in psychology and psychiatry, in relation to people diagnosed with disabilities, see Wolf-­Meyer (2020). 21. Lock (1980:34–­36). 22. See, for example, Hobson (1993); Berwick and Chomsky (2016). 23. Bates (1976, 1979); Ochs and Schieffelin (1986). 24. Bates’s pragmatically oriented alternative to generative linguistics encouraged scholars to rethink rather than reject Chomskian innateness; see Elman, Bates, and Johnson (1996). On Bates’s revolutionary research on language development, see Bates (1976, 1979); Bates, Bretherton, and Snyder (1988); and MacWhinney and Bates (1989). For a volume dedicated to Bates’s influence, see Tomasello and Slobin (2005). 25. This includes the important work of Ginsburg and Rapp 2013, 2020; McKearney and Zoanni (2018); Rutherford (2020); A. Jackson (2021); Durban (2022), and others. 26. Rather than making a “dichotomous distinction between autistic and normative sociality,” Ochs and Solomon’s term “autistic sociality” is meant to highlight “the gray areas of sociality shared by those diagnosed with autism and neurologically unaffected persons” (2010:84). 27. Like “queer” and “queering,” the terms “crip” and “cripping” appropriate a denigrating term for a disabled person (“cripple”) in order to signal creative resistance against tendencies toward normalization. Avoiding the binary alternatives of medical reductionism and social constructivism, crip theory, as developed by Clare (1999), McRuer (2006), M. Chen (2012), Kafer (2013), and others, aims to challenge compulsory able-­bodiedness so often taken for granted. 28. Bates (1979:368). 29. Ochs and Solomon (2010:84). 30. Rosa (2019). 31. In Peircean semiotic terms, “contact” and “contrast” are my glosses for indexical and iconic inferences or “modalities of representation,” respectively; see Kohn (2013:8). 32. Ochs and Schieffelin (1979, 1986, 1990); Lock (1980). 33. Nonsymbolic communication is as important as formal spoken or signed language, and provides the semiotic architecture, the foundation for all talk (Welby 1903, 1985 [1911]; Bates 1979; Savage-­Rumbaugh 1986; T. Deacon 1997; Kohn 2013). 34. Kendon provides a useful overview of nonverbal research (2004:287–­90). On the phenomenon of home signs among white American deaf people, see Tervoort (1961), Goldin-­Meadow and Feldman (1977), and Goldin-­Meadow (2003). For comparison, see Kuschel (1973), Yau (1985), Washabaugh (1986), Hoffman-­Dilloway (2011, 2016), and Green (2014, 2022), all of whom examine the “emergent” and “alternate” sign languages among deaf people around the world, including among Black and Indigenous people of color. 35. Margaret Mead expressed the need for a positive term for “nonverbal” behavior in line with what Birdwhistell proposed; see M. Davis (2001). On the fraught

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relationship between Mead and disability, see Pearson (2023). For helpful reviews and interventions, see also Trager (1958) and Pennycook (1985) on paralanguage, and Kendon (2004) and Streeck (2009) on gesture, respectively. Poyatas (1994) advocates for Birdwhistell’s term to distinguish it from paralanguage (see also Wharton 2009, 2017). Other researchers do not bother to distinguish between kinesics and paralanguage. For interesting examples that detail the overlap of different kinesic and linguistic orders of semiotic interaction, see J. Green and Wilkins (2014). 36. Gibson (1956:4). 37. As Michael Lempert argues, “the degree to which one can speak of an illocutionary gestural source depends in part on the degree to which manual gesture is conventionalized and begins to have cross-­modally isolable ‘meaning’ and hence a measure of autonomy” (Lempert 2018:129n16; see also Lempert 2017). If a given gesture has some “measure of autonomy,” this means that it can be isolated from all the other modalities that happen alongside it. According to Wharton (2009), however,it is possible in theory to distinguish the question of how conventionalized a nonverbal action is from whether it is more or less intentional and inferential; see also Green (2022). 38. On emergence in Peirce, see Forster (2011). For James’s sense of evolutionary creativity, which has been compared to that of Bergson, see Pearce (2018). My sense of creativity here is primarily derived from a practical inability to rely upon any shared codes, biological or cultural, in communication. But my use of the term tends to coincide with certain interpretations of Gabriel Tarde, for whom, according to David Toews, creativity was thoroughly social, so that invention is a process of “anarchic or spontaneous mutual influence among actors” (2003:86). 39. This is very similar to a write-­up that linguist Lock provides of an infant-­mother interaction, in which the infant indicated a preferred state of affairs by selecting out possibilities that they did not prefer (Lock 1980:86–­88). 40. Not all art critics describe art work as aiming to achieve such transcendence, but some do quite clearly, most obviously Hannah Arendt (1958). 41. Graeber and Wengrow’s Dawn of Everything (2021). In a book that covers a wide range of topics, they take a moment to make a point about human universals: “not only do we look the same, in many ways we act the same as well (for instance, everywhere from the Australian outback to Amazonia, rolling one’s eyes is a way of saying, ‘what an idiot!’)”(2021:80). Like most people, they are seemingly unaware or unbothered that this term of abuse (“idiot”) has been appropriated from past labels for cognitively disabled persons. Yet, later in the same book, they also point out that views of extreme and nonconforming individuals are far from universal or universally negative (2021:102–­4). If eye-­rolling is quasi-­universal, in other words, what counts as unacceptable behavior varies widely. 42. The lack of guarantee is part of the uncertain ground of contact-­based semiosis, or indexical modalities of representation. However, I follow Constantine Nakassis, who argues that “the ambivalence of indexicality . . . is an opportunity and invitation, a site for analytic and theoretical refinement and productivity” (2018:292). 43. See Collins (2006:253), Rymes (2014), Kohn (2013), Savage-­Rumbaugh (1986), and Haraway (2008), respectively.

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44. This is the more optimistic reading of the growth of signs often attributed to the metaphysical and semiotic system elaborated over many years by Peirce; see Parker (1998), Forster (2011). 45. See Chatterji (1998). 46. One way to challenge ableist ways of representing disability is to situate bodily and cognitive distinctiveness not as a lack but as a shifting and contested form of difference (like class, race, and gender) that is both real and constructed (Barnes 2016). 47. Reed-­Danahay (2009); Bochner and Ellis (2016). 48. Ettore (2017). 49. Buch (2018). 50. In the disability studies literature, some refer to this transformation of daily routines and temporal rhythms around caregiving as “crip time” (see Kafer 2013). 51. Platsky (2018). 52. On the sense of alienation and discontent that can emerge specific to care relationships and labor, see Crean (2018), for whom it manifests intersectionally as a politically attuned care consciousness. 53. See Erevelles (2011). Worldwide, there is a growing aging and vulnerable population, some of whom suffer from what Julie Livingston (2005) and Jasbir Puar (2017) characterize as debility. The term “denotes . . . the frailties associated with chronic illness and aging” (Livingston 2005:6), as well as the impairments usually glossed as “disability” (see also Ralph 2014). 54. Kittay (1999); Kröger (2009); Perrons (2014); Elson (2019). 55. Buch (2018). 56. For a discussion of the importance of theorizing communication in care research, see Black (2018) and Arnold and Black (2020). 57. All names of interviewees are pseudonyms unless otherwise indicated. 58. But see chapter 2. Charlie sort of says “tickle,” as I explain there. But is it a word? 59. Reno (2023). 60. For some of the literature on care informed by ethnographic methods, see Sacks (1988); Glenn (1992, 2000); De-­Ortiz (1993); Tung (2000); Lan (2008); England and Dyck (2012); and Stevenson (2014). 61. The terms “overmining” and “undermining” are borrowed and adapted from Graham Harman’s Prince of Networks (2009), an overview of Bruno Latour and object-­ oriented ontology. 62. Broadly speaking, pragmatism tends to refuse binary distinctions between fact and value, epistemology and ontology, tendencies shared with strands of theoretical feminism; see Siegfried (1996). For an effort to bridge James’s ideas with disability studies, see Marsden (2017). 63. Jackson (1989:5–­6). 64. Jackson (1989); eee also Desjarlais (2018).

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1. hooks (1994), as described in Monahan (2011:104). 2. As anthropologist Radhika Govindrajan writes, in the context of the Indian Himalayas, “multispecies relatedness in Kumaon was often a rather knotty affair. The fellowship between pahari humans and animals was rooted not just in shared substance or mutual devotion to devidyavta but also in the common experience of inequality and exploitation”(2018:11). For more on the violence and rejection that can underpin care and affection, see hooks (1989) and Carsten (2013). For a complementary discussion of the dangers of conflating care with violence and vice versa, see McKearney (2020). 3. While this narrative is true to our experience, it also comes close to the trope of “overcoming” adversity one finds in popular storytelling about disability. At its worst, this trope involves “culturally rehabilitating disabled people’s experiences within normative social contexts” (Mitchell and Snyder 2015:77; see also MacGregor 2023). This means that stories like the one I just told can distract from the necessary politicization of disability, therefore obscuring the structural inequalities behind specific care situations (see Erevelles 2011). For instance, recall the situation I alluded to of our friends struggling to find good medical options for their children. 4. The interactions change over time. For example, one iteration of this, which lasted during the winter of 2020, involved repeatedly clapping open palms against either side of his head, usually in a rhythmic way, “Bop! Bop! Bop-­bop-­bop!” Another involves gently pounding his back, arms and chest with a closed fist. 5. Geertz (1973). 6. Sidnell and Enfield (2017) use commentary on the Geertz-­Ryle incident to argue for the importance of intentionality in linguistic communication, especially as it relates to issues of social accountability. As we will see throughout this book, the issue around unclear intention is not the only ambiguous dimension to nonsymbolic communication; as Nakassis (2018) points out, this is due to the inherent mediation of all sign use—­there is no immediacy to any sign by definition since it mediates an interpretation of something else. 7. For the role of language in mediating the inferences we make about other people’s actions—­including whether or not they are intentional—­see Keane (2016:85–­ 86). This means that there are playful and contested ways to talk about and reflect on aggressive acts. As Asif Agha (1997) shows, people can talk in ways that suggest aggression but simultaneously mask or conceal it. 8. This is partly a reflection of the fact that the word “stance” relates to generic ability: a person with able-­bodied use of their legs can stand at attention and a person who is sufficiently able-­minded and linguistically capable can stand for something. 9. See Ochs (1993); Kockleman (2004); Kiesling (2005); Jaffe (2009); Wu (2004); Lempert (2008). 10. Schalk (2022); Erevelles (2013); Morgan (2021). 11. Morgan (2021:1410n 34).Thank you to Adriana Petryna for comments that helped me to better formulate this idea. 12. Graeber (2009:515).

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13. On the difficulty of representing violence symbolically, see Feldman (1991); Daniel (1996). 14. Berman (2018:22). 15. See R. Nelson (2021). 16. On the James-­Cannon debate, and misunderstandings of James’s theory of emotions that arose from it, see Ellsworth (1994). 17. Kohn (2013). 18. Damasio (2004). 19. Bard also used the famous example of Phineas Gage, an American railroad foreman who suffered an accident working in Vermont in 1848. After much of Gage’s left frontal lobe was badly damaged, he famously went through a dramatic change in behavior where, it was assumed by Bard and others, his higher cortex could no longer control his lower brain’s impulses; see Iversen, Kupfermann, and Kandel (2000). On thinking through the political and ethical complexity of taking human and nonhuman disability seriously, see Taylor (2017). 20. A dog would not likely have learned to hide its tail or make its body behave differently, though in theory it could be trained to do so. Even so, such training would only likely come from associating more with humans, not through an individual dog’s private trial and error with each new human encounter. For more on this quandary, with respect to chimpanzees and gorillas, see chapters 3 and 4. 21. Nelson (2021). 22. Protevi (2013). 23. hooks (1984:120). 24. By comparison, when we lived in South London, there were six different schools that Charlie could attend spread throughout that part of the city (roughly Zones 1 and 2 south of the Thames), though this led to other problems. By accepting our child, a London school could request more funding from the city to meet his needs, meaning they seemed incentivized to potentially mischaracterize to us their existing capacity and resources for doing so. Having more choice about where Charlie could go, in the end, still came down to a struggle for limited resources from the state. 25. Birdwhistell (1970:6). 26. Sarrett (2019:77). 27. Seshadri (2012). 28. On the history of this, see Trent Jr. (1994). 29. New York state has primarily focused on restructuring funding processes, creating what critics in the teachers’ union call a neoliberal “shell game.” See NYSUT Media Relations (2020). 30. Cortina and San Román (2006). 31. This fits with an analysis by McKearney (2020) in a care context in the United Kingdom for people with intellectual disabilities. McKearney points out that broader political and moral arguments surrounding care are problematic if they fail to consider how care is configured in particular ways in specific social interactions. As I see it, home signs are part of that.

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32. On intersectionality, see Krenshaw (2017). 33. Kelly (2017:109). 34. This is in keeping with Simplican’s call for more complex interpretation of situations of dependency (2015:224–­25). 35. Rosa (2019). 36. See Schalk (2022). 37. Aronson and Boveda (2017). 38. Leslie (1993). 39. Ekman, Roper, and Hager (1980); Ekman (1992). 40. See Fridlund (2017) for skepticism about universalizing approaches toward facial expression and a more nuanced biocultural alternative. 41. M. Davis (2001). 42. Ekman (2009). 43. This includes identifying people who are, and training others to become, reliable human lie detectors, though this has come under criticism as little more than pseudoscience; see Smith (2020). 44. Dwoskin and Rusli (2015). 45. See especially Kittay (1999); and chapter 5. 46. One alternative to Ekman’s argument would be to understand faces as sites of quasi-­gesture or “affective pragmatics”; see Scarantino (2017). 47. On the Parsa killing, see Boucher (2020); on the shooting of Cameron, see Harkins (2020). 48. Rosa (2019). 49. In these situations, ableism and racism are “mutually constitutive,” as Sami Schalk puts it, which calls for a Black disability politics (2022:145–­46). 50. McKearney and Zoanni (2018); Pearson (n.d.). 51. I am, admittedly, abstracting this ethnographic detail from its broader context. For a more recent appraisal of Hitchcock’s ethnography, especially in terms of marriage and kinship, see Ahearn (2002). 52. Hitchcock (1966:8). 53. A. Jackson (2021:173). 54. While gesture and speech are equally “utterances” in the same sense, Kendon (2004) also acknowledges that it is more obvious when talk is happening than when gesture is, given the relative “ordering” of the former (due to grammatical and phonological systems that mediate talk). Gesture too is ordered, Kendon makes clear, but not nearly to the same extent and therefore not as clearly identifiable as “utterance” even when it is. 55. Seshadri (2012) calls this the “violence of the name” and shows how often seemingly “wild,” mute children become powerful challenges to it. 56. See Berman (2018). 57. Seshadri is specifically interested in the productivity and multiplicity of silence

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and its function in establishing and upsetting boundary-­making between humans and those animalized and/or racialized as nonhuman. Silence, in Seshadri’s terms, functions “both within and without language—­a site of the ­inhuman . . . where the traditional dichotomies (human/animal, soveregn/outlaw) and the traditional pairs (law/ language, belonging/name, mind/body) find their mediation” (2012:40). 58. Wolf-­Meyer (2020:108).

Ch a pter T wo 1. This chapter is therefore in keeping with Cekaite and Mondada’s (2021) volume and its survey of different kinds of touch and their manifold importance. I draw especially on Marjorie Goodwin’s (2021) examination of hugs in that book. 2. There is a growing literature on touch, which I engage with in this chapter primarily as a resource for thinking through home signs and semiotic creativity. I am especially influenced, however, by scholars who examine multiple senses of touch (Classen 2005; Segal 2009), in typically gendered caregiving situations (Classen 2012), around questions of nonverbal communication (Streeck 2009), concerning dis/ability (Paterson 2007, 2016), or all of the above (Cekaite and Mondada 2021). 3. It is hard to know how to properly classify this figure of speech, since that ultimately depends on how close, how interdependent communication and contact are thought to be. For example, if we consider all communication as fundamentally relying on some form of contact and vice versa, then someone’s saying “stay in touch” might better be thought of as synecdoche, not metonym. 4. I will talk more about the extension (and extensibility) of kinesic communication in chapter 3, discussing among other things how the use of assistive technology by people like Charlie tends to call into question assumptions about who is really speaking and troubles traditional approaches to communicative competence (see de León and García-­Sánchez 2021). 5. See Pratt (1991, 1992). Language and signs are important not only for everyday negotiations of a practical sort in contact zones, sometimes called “middle grounds” (White 1991; Conklin and Graham 1995), but also for racializing projects that seek to discipline and dominate how bodies and signs, and bodies as signs, are interpreted (Mignolo 1995). 6. Haraway (2008:7); see also Govindrajan (2018). 7. Haraway (2008:36). 8. Haraway associates killability less with ontological distinctions between kind (dog vs. human) and more with difficult decisions about interacting with and sometimes using sentient beings, including “purebred” dogs that represent “the embodiment of animalizing racist eugenics” (2008:96; see also Hartigan 2017). 9. Taylor (2017). 10. For more on the importance of contact-­based signs with training, and relating to horses specifically, see Draaisma (2018). On multispecies relations with horses, see Hartigan (2020). 11. Cekaite and Mondada (2021:1). 12. Mondeme (2021:184).

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13. Meyer and Streeck (2021:313). 14. Paterson (2007:34). 15. On the materiality of language, which challenges the tendency to see language as abstract and ideal, see M. Y. Chen (2012); Cavanaugh and Shankar (2017). 16. Itkonen, Guemati, and Perez-­Roman (1948:885). 17. Ghosh (1992:212–­22). 18. A. Jackson (2021:71). 19. Gillin (1936). 20. Merrill (1988). 21. Handy (1923). 22. McGuire and Van Dyke (2008). 23. Mountford (1958). 24. Thoden van Velzen and van Wetering (1991). 25. Osgood (1959); Krause and Gunter (1956); Thoden van Velzen and van Wetering (1991). 26. As I will discuss in the next two chapters, this is also the criterion that language instructors use to determine whether “unnatural” language learners are legitimately speaking for themselves. 27. Ong (1967:111–­12). 28. More recent research on ape gestures out of captivity also show their signs to be word-­like in some ways and not in others, in an analysis that overlaps with my take on “iggle” here; see Hobaiter, Graham, and Byrne (2022). Wild ape gestures therefore might more accurately be considered home signs—­not because they are definitely not language, but because they appear to involve the same kind of contingent creativity. 29. Sicoli (2010:522). 30. M. Goodwin (2021:30–­31). 31. M. Goodwin (2021:27). 32. See Kittay (1999); Shildrick (2002); Kafer (2013). The point is not that actual disability is a marked exception to normal wholeness and independence, but that representations of disability as lack and loss are a necessary fiction to sustain modern ideologies of the autonomous individual; see Garland-­Thomson (1996). 33. Protevi (2013); see also chapter 1. 34. Of course, conditions can conspire to denude a fixed action pattern of its original purpose. It could be that tickling and ticklishness are “leftovers” like wisdom teeth that no longer serve the purpose that made them adaptive in the first place. It could also be that they were never adaptive and were a weird historical accident of being a species with exposed flesh and social upbringings. 35. Weisfeld (1993); Harris and Christenfeld (1997,1999). 36. Hillix and Rumbaugh (2004:73). 37. To the extent that they attempted to understand, respectively, the evolution, etiology, and physiology of this peculiar yet universal form of haptic sociality, the

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effort was part of an unspoken commitment to what Agamben (2002) calls the anthropological machine—­that loose set of practices aimed at identifying, delimiting, and elaborating upon the human insofar as it is different from the nonhuman, the more-­ than-­human, the inhuman. 38. See Lepore (2011) for the story of this famed encounter. 39. Blum (2006:96). 40. Harris and Christenfeld (1999). 41. Paterson (2007:166). 42. Tarde (2010:168–­69). 43. Moorer (2021:12–­13). 44. A. Jackson (2021:72). 45. Rutherford (2020:1474). 46. When I was growing up, as both a ticklish child and a tickling sibling and caregiver, one common strategy to get someone bigger than you to stop was to say, “Stop, you’re going to make me pee!” Whether true or not, that gambit perfectly operates on multiple registers and tensions simultaneously: I can’t make you stop, this is out of my control, but if you don’t stop then my loss of control will affect us both negatively. 47. Baron-­Cohen (1997). 48. Discussion of the opacity or clarity of other people’s minds has also been an anthropological discussion, most often with regard to people from Melanesia, but generally concerned with sociality, more than with whether there is an ontological grasp that other minds exist per se; see Keane (2008). Ochs and Solomon (2004) challenge stereotypes about the supposedly asocial tendencies of people diagnosed on the autism spectrum. 49. Hobson (1993); Hobson and Meyer (2005). 50. Paterson (2007:112). 51. On frisson and ASMR, their similarities and differences, see Kovacevich and Huron (2018). On the “queer intimacy” of ASMR, see Andersen (2015). 52. In exploring the queerness of contact, I am influenced by Sara Ahmed (2006) and Mel Y. Chen (2012), who in different ways complicate how we might imagine a phenomenologically emplaced body, which does not retain its integrity but instead interanimates with surrounding objects and, in Chen’s reading, can even contaminate and reform them through relations of toxicity. 53. Synnott (2005:42). 54. Mead (1934). 55. Connor (2004:260–­61). 56. Barad (2012:209). 57. For Barad, this makes self-­touching the queerest thing of all. She writes that “self-­touching is an encounter with the infinite alterity of the self. Matter is an enfolding, an involution, it cannot help touching itself and in this self-­touching it comes in contact with the infinite alterity that it is” (2012:213, italics in original). 58. Chen (2012:212–­17).

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59. Paterson (2007:59). 60. Black (2018). 61. Goodwin (2017:76); see also Goodwin and Cekaite (2018). 62. Goodwin and Cekaite (2018). 63. Goode (1994:39). 64. Cekaite (2016); Burdelski and Cekaite (2021); and Cekaite and Holm (2017). 65. Merlino (2021:198). 66. Biederman et al. (1998). 67. On force signs in education and caring, see chapter 1. 68. Activists who have been diagnosed on the autism spectrum, usually with Asperger’s syndrome, have made this point (Chapman and Bovell 2022). Unlike the ideally mutual bonds of intimacy that are associated with haptic sociality, including tickling, hand-­over-­hand guidance involves softly but meaningfully overriding one person’s intentions with another’s. 69. Sedgwick and Frank (2003). 70. Kafer (2013); Kulick and Rydstrom (2016). 71. Kafer (2013:65). 72. Spain (2016). 73. Associated Press (2008). 74. On proxemics, see Hall et al. (1968). Examining Deaf Blind people in an American university context, Terra Edwards (2018) explores how the material environment becomes incorporated in speech and communication when touch and feel are made primary.

Ch a pter Th r ee 1. On needing to estrange our relationships to technology and ask new questions, see Hendren (2011); Kafer (2019). 2. Indeed, sometimes Charlie seems to regard our phones in a similar way, as standing in the way of interacting with him as he would like, and he discourages us from texting or watching our phones in his presence. 3. Maybe not, but those are the interpretive gambles involved in home signing (see chapter 1), and much besides. For example, see Seligman (2009) on the role of the subjunctive sense of “as if ” in ritual actions and imagining a social world we share in general. 4. In her excellent and pathbreaking book on the subject, Meryl Alper (2017) labels this tendency to reduce facilitation devices to substitutes for language an example of communication ideologies. 5. For an overview of these pervasive binaries and their inadequacies, see Bauman and Briggs (2003); Keane (2007); Cavanaugh and Shankar (2017); and Irvine (1989, 2017). 6. Bates (1976, 1979); Ochs and Schieffelin (1979, 1986, 1990). For more recent accounts of the distributedness of linguistic competence, see Cowley (2003, 2010). 7. Philosopher Lisa Guenther (2012) uses this observation to begin a study of ethics

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from the point of view of having been born, of all our lives having begun with helpless and dependent in-­fancy. 8. Axel (2006:356–­57). 9. Axel (2006:373). 10. The question of “who is speaking” can also be compromised or complicated when religious speech is involved and it is other-­than-­human powers that are at work, not technical prostheses per se; see Keane (2000), Harkness (2021). 11. Birdwhistell’s kinesics is one example. On these postwar developments and their relationship to anthropology, see Price (2008); Boyer (2010). Both behaviorism and cybernetics were highly influential and shared a focus on the rationalization and control of human and nonhuman systems, conceived as machine-­like relays for inputs and outputs of observable stimuli and information, respectively. 12. According to Mara Mills (2010), disabled persons were crucial in the development of Euro-­American mechanistic epistemologies from the nineteenth century onward. In the 1940s, for example, medically deaf people played a critical role in the development of speech wave visualization, ultimately contributing to the growth of telecommunications and cybernetic theories of signal transmission. 13. Sicoli (2022:7). 14. Sicoli (2022:7). 15. Sicoli (2022:64). 16. In a previous version of this argument (Reno 2012), I described them as linguistic equipment, but I have changed that here in order to maintain the sense of uncertainty, or in-­betweenness, that characterizes home signs, not clearly language and not clearly not language. 17. Rutherford (2021:139). 18. In a book about his child diagnosed with a disability, Ron Siskund (2014) talks about how it was through animated Disney characters that his son Owen’s language became apparent. Thank you to an anonymous reviewer for pointing out the similarity. 19. Alper (2017); Kafer (2019). 20. This is a form of control touch; see chapter 2. 21. Bewley and Baker (2001). 22. Catania (1999). 23. See http://​backyardigans​.wikia​.com/​wiki/​Thank​_You. 24. This is more generally known as “positive reinforcement,” but for many psychologists and educators Thorndike’s method has been formalized into what is known as Applied Behavioral Analysis (or ABA), an educational approach that, while extremely controversial amonog some advocates for autism justice, is still widely regarded on both sides of the anglophone Atlantic as the best and only means of habilitating nonverbal individuals into language (see Chapman and Bovell 2022). From a Peircean perspective, targeting the consequences of actions means targeting interpretants or the effect of a sign once it is interpreted. 25. Thorndike’s work on experimental selection was likely seen favorably by William James because it aligned with his specific take on Darwinian evolution (somewhat

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similar to that of his friend and fellow Swedenborgian Christian, Charles Peirce): that it was best thought of as a lesson about the emergent and effectual creativity of individuals (see McGranahan 2017). 26. Harkness (2021:167). 27. This is related to propositionality, which Constantine Nakassis describes as “the symbolic ground of language that functions independently of context, free from the messy Matter weighing down sublime (Logical) form” (2018:284). 28. Ochs and Schieffelin (1990:214). 29. Carr and Felce (2007); Howlin et al. (2007). 30. C. Goodwin (2000). 31. Candland (1993:366). 32. My playful title is a reference to one such nonhuman animal: the popular phenomenon of “Clever Hans” in early twentieth-­century Germany. Hans was a horse that, it was claimed, could do arithmetic, but it turned out that Hans was not doing math so much as responding to the human trainer. But, as zoologist Heini Hediger (2010:244–­ 46) pointed out—­in a criticism of ape language studies—­simply getting Hans to perform in a way that appeared to be math involved successful biosemiotic communication between equine and human. 33. McQuinn (2020:112). 34. For example, the conviction that people like Charlie can be taught to use symbols may be in part the result of a species-­specific assumption: they are human biologically . . . so why not linguistically, the supposed hallmark of human difference? This conviction, skeptics can then claim, potentially contaminates linguistic training, biasing us to see language developing where it might not be. 35. Hillix and Rumbaugh (2004:156). 36. Haraway (1989:148). 37. Haraway (1989:141). 38. Savage-­Rumbaugh (1986:325). 39. The manipulation of combinations of lexigrams is important, precisely because symbolic associations are motivated by logical relationships between sign tokens and only rarely by relationships between signs and the world of rewards and objects (Deacon 1997:79–­92; see also Hill 1978). 40. Deacon (1997:125). 41. Tomasello (2003:88). 42. Seidenberg and Petitto (1987). 43. Cowley (2005). 44. Hillix and Rumbaugh (2004:175). This can easily be compared to Charlie’s tickling behavior, discussed in the preceding chapter. That comparison does not sit well with me, but there you have it. 45. Hillix and Rumbaugh (2004:175). 46. Goode (1994:41). 47. Hoffman-­Dilloway (2011).

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48. Ochs, Solomon, and Sterponi (2005). 49. Behaviorism is also the inspiration behind ABA; see the discussio on “control touch” in chapter 2. 50. Jacobson, Mulick, and Foxx (2005). 51. On the cultural history of ventriloquism as a material practice, see Connor (2000). 52. See Goffman (1981); Irvine (1996). 53. C. Goodwin (2000:95). 54. Duranti (2005:455). 55. Latour (2004:68). 56. Sterne (2021:108–­9). 57. Axel (2006). Although I do not explore it here, a similar argument could be made about secular conceptions of the human/nonhuman that do not allow for prosthetic speech through other-­than-­human spirits and deities; see Zoanni (2021). 58. Bates, Bretherton, and Snyder (1988). 59. Schalk (2018). As Tim Ingold writes, “every being emerges, with its particular form, dispositions and capacities, as a locus of growth,” and consequently, “one cannot . . . lay down the form a being will take independently of the circumstances of its life in the world” (2000:108–­9). 60. Agamben (2002). 61. Rutherford (2021:140). 62. Hediger (2010). See note 32, above. 63. Pedersen (2016).

Ch a pter Fou r 1. Green (2022). 2. Sullivan was also a closeted gay man for much of his life, which some say heavily influenced his approach, which amounts to a queer psychiatry (see Blechner 2005). 3. Cortina (2020). 4. This is what Donnel Stern (2010), developing Sullivan’s ideas, calls subsymbolic experience. 5. Sullivan (1953:9). 6. Rutherford (2009:4). 7. Rutherford (2009:4–­5). 8. Sympathy is frequently mentioned in Virginia Woolf ’s nonfiction and fiction works. She makes clear how sympathy can be gendered and oppressive, when compulsory, as well as something like a basic human need that everyone strives for. On the politics of sympathy in Woolf and other modernist writers, see Martin (2013). 9. Bergson (1900:5a). 10. Like other people diagnosed on the autism spectrum, Charlie tends to struggle with the basic ingredients for shared interactions, including eye contact and shared attention. This is what made some of his carers suspicious that he might be different,

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when he was a toddler. I am not focusing on this, again, because I am more interested in developing what people like Charlie have in common and reveal about everyone, everywhere. We all use home signs; Charlie is just better at coming up with them. He has so much practice. 11. The squiggly equal sign (≈) is used in mathematics to mean “approximately equal to.” 12. To get into semiotic classification, the slap and snap are therefore meant to be interpreted iconically in at least two senses: first, they refer ack to the motives of the person to whose body the signifying arm and hand are attached; following from that, the louder they are, the more they represent stubborn insistence on the part of that social persona creating the intentional noise (bossy Daddy, resistant Charlie). We might also add that the slap and snap are meant to be interpreted indexically since they are directed and directional, in that immediate place and time our bodies inhabited. 13. Parker (1998:13). 14. There are debates about whether Peircean semiotics can account for novelty or errors in interpretation. Technically, in his notes Peirce considered the importance of “differential” interpretation. But he eventually discarded this for an approach emphasizing the importance of the “object” in the triad of semiotics; see Jappy (2016). 15. Davies (2017:483). 16. On the possibility of expressing poetic parallelism through gesture, see Lempert (2018). 17. Agamben (2000:59). 18. I owe my interpretation of Agamben here to the reading by Seshadri (2012:223–­27). 19. M. Goodwin (2017); M. Goodwin and Cekaite (2018). 20. M. Goodwin and Cekaite (2018:121–­22). 21. M. Jackson (1989:8). 22. The name Gorilla Sign Language is deservedly controversial, first, because it could be seen to imply that human sign language is a more basic sign system that is somehow more equivalent to natural signaling (for instance, yawning or laughing), when in fact ASL and all sign languages are thoroughly symbolic (see Taylor 2017:47–­ 55). This is a common prejudice, derived from audism, that is faced by speakers of ASL and other sign languages. Second, and relatedly, the term GSL potentially overvalues the linguistic abilities of Koko or the symbolic capacities of her kin. 23. Hill (1978). 24. Hillix and Rumbaugh (2004:156). 25. Haraway offers a helpful analysis of the popular narrative of Koko’s request for and adoption of a kitten, her own animal captive to keep with her in captivity. In representations such as these, Koko is not granted the recognition of existing in a shared, coeval world where “kittens have particular resonances in European-­derived industrial cultures,” but rather serves as a cultural figure that “re-­naturalize(s) ‘man’” (Haraway 1989:145). One could extend Haraway by adding that the coeval world with Patterson has also been denied sufficient recognition. 26. Blackmore (2000:88).

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27. Uddin (2006:113). 28. C. Goodwin (2004); Hoffman-­Dilloway (2011). 29. Blum (1994:32). 30. For the whole story, see Seife (2018). 31. For an argument to rethink consent and sex in terms of the ethics of pleasure rather than protection, see Appel (2010). See Shildrick (2009) and Kulick and Rydstrom (2016) for a more in-­depth discussion of the politics and ethics involved in disabled sexuality. 32. Kafka (1936:170). 33. McQuinn (2020). 34. Haraway (1989). 35. Benham (2005). 36. Haraway also discusses ape language studies and sexuality, arguing that they implicate “monkeys, apes, and humans, all entwined in a compulsory reproductive politics” (1989:146). 37. On ideological and cultural assumptions associated with care, see Stevenson (2014). 38. For a feminist overview and critique of the home as a gendered “domestic sphere” in American history, see Kerber (1988). 39. Woolf (1981:171–­72). 40. C. Goodwin (2007). 41. Our awareness of shared kinesic cues is more pronounced when we are denied direct face-­to-­face contact and words are almost all we have to use. I write this at a time when stay-­at-­home orders due to the COVID-­19 pandemic are in full effect. After months of having to rely entirely on phone calls, emails, and Zoom meetings, many people have become painfully aware of how important physical co-­presence is for meaningful interaction; see Katila, Gan, and Goodwin (2020).

Ch a pter Fi v e 1. Bateson (1972:178). 2. And yet, the “drama” this precipitates, according to Bateson, does not leave behind involuntary messaging once and for all. This is so because, in his gendered account, “many a man has been thrown off balance by a whiff of perfume, and if we are to believe the advertisers, it seems that these signals, voluntarily worn, have sometimes an automatic and auto suggestive effect even upon the voluntary wearer” (Bateson 1972:178–­79). 3. To be a little less glib, this is a problem—­found in other contexts of care for people diagnosed with intellectual disabilities (McKearney 2022)—­with balancing dependence and independence. To paraphrase McKearney, the problem with Charlie’s toileting is that he is too independent-­minded about his preferred form of dependence on others. 4. On the role of toileting disability for people residing in long-­term-­care or assisted-­living facilities, see Yeung et al. (2019).

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5. Kafer (2013:89). 6. Buch (2018:12). 7. Perrons (2014). 8. I talk about the paradoxes of care in a recent article (Reno 2023). 9. Seshadri (2012:220). 10. While the specific clientele of Jodie’s program have been diagnosed with a range of cognitive and linguistic impairments, the same problems would trouble almost any care facility where assistance with toileting is present (see Jervis 2001). 11. Kulick and Rydstrom (2016:90). 12. Das (2007, 2010). 13. Keane (2016:65). 14. Lambek (2010:53). 15. Keane (2016:68). 16. Tomasello (1999). Tomasello follows here the legacy of Elizabeth Bates. 17. Rumsey (2010:107). 18. Keane (2016:199). 19. Hobson (1993); see also chapter 2. 20. This is about managing how others see you as much as it is about not affecting them negatively. As in all acts of communication, sender and receiver are inseparable in hygienic habit formation. 21. In his ethnography of “alingual” residents, Goode (1994:20–­21) talks in passing about a child named Chris occasionally rubbing against him and the uncertainty about how to manage this: “Often I would bounce her and throw her into the air, and she seemed to enjoy her helplessness—­abandoning herself to the sensations these activities provided for her. During such activities she would rub her genitals against me (something that was not promoted but also not punished).” 22. Gelfand (1979:13). 23. Hopkins, Russell, and Schaeffer (2012:37). 24. Hopkins, Russell, and Schaeffer (2012:38). 25. In fact, recent research on chimpanzee gestures in the wild suggests that even without context, human observers can seemingly correctly identify the semantic force behind specific signs used in nonhuman ape communities (Graham and Hobaiter 2023). 26. Withy (2014). 27. L. Davis (2002:27). 28. L. Davis (2002:29). 29. L. Davis (2002:30). 30. L. Davis (2002:30). 31. This work stems from the writings of Carol Gilligan (1982), for whom care ethics was gendered (among the American college students she studied) so that it more clearly formed part of women’s lives and the stories they told about themselves (171).

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Gilligan’s ethics of care has more recently been associated with American pragmatism and Jane Addams (Siegfried 1996; Hamington 2009). 32. Hamington (2009:103, italics mine). 33. This can productively be compared with what I understand to be McKearney’s (2020) argument that care relations should be understood primarily in the contexts of actual caregiving relationships and not in the abstract as a political or moral ideal. Among other things, such an understanding allows the complexity of persons and their relationships to show through. 34. Anderson (2004:4). 35. Stevenson (2014:11). Defining care in this way, Stevenson complicates familiar senses of care that reduce it to “good intentions, positive outcomes, or sentimental responses to suffering” (11). 36. Hill (2020:264). 37. A. Jackson (2021:61). 38. Wendell (1996). 39. A. Jackson (2021:63). 40. See chapter 4 for a more in-­depth discusison of this interaction. 41. A. Jackson (2021:49). 42. In Thinking without Words (2003), philosopher José Luis Bermúdez points out that the tendency has been to assume that thought, strictly speaking, is not possible outside of language (a tendency he challenges). 43. See Bauman and Briggs (2003), Keane (2007), and Simplican (2015), respectively. 44. Kafer (2013:62). 45. Piepzna-­Samarashinha (2018:65).

Mmmmmm 1. But if he were only speaking to himself with these sounds, would it not still count as communication? G. H. Mead (1934) and L. S. Vygotsky (1934) both argued that thought was just a kind of inner speech, a way of talking to ourselves, but both also argued that language was vital to this process. 2. Berger (2014:28). 3. Rich (2013:31). 4. Serres (1982:32). 5. Maybe Silverstein only mimicked the spit, it doesn’t really matter. As I see it, he was demonstrating that no representation is identical with the thing it is representing, so it would actually have been even more appropriate had he only performed the spit, not actually produced any. Frankly, I don’t even know if this ever happened, I wasn’t there. I am really just representing (in writing) an idea I held on to (in memory) of someone else’s representation to others (in reported speech) of a representation they held on to (in their memory) of Silverstein’s representation of his own spit (in person) to represent his own ideas (that is, in Silverstein’s head) about Putnam’s argument

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about representation (in writing). That is an illustration of the kind of crazy semiotic journey that an idea can go on due to the power of symbolic representation: words, memory, speech, memory, spit/speech, thoughts, words. 6. In Unraveling, Matthew Wolf-­Meyer associates this scholarly affinity for language with an attachment to symbolic subjectivity for which “communication alone is insufficient; rather, language as access to a shared, normalized interpretive repertoire is a necessary basis for personhood and subjectivity” (2020:63). Wolf-­Meyer contends that one way around this problem is thinking differently about being and becoming, for instance, in a more embodied and cybernetic fashion. My chapters 2 and 3 are broadly aligned with this position. 7. Lippit (2000:7). 8. Biehl (2005:10). 9. Biehl (2005:35–­36). 10. Boyd and Richerson (2006:453). 11. Kristeva (1984:68). 12. Berger (2014:17). 13. Berger (2014:17). 14. Agamben (2002:34–­35). 15. Wilson (1975:168). 16. Sullivan (1953:21). 17. For instance, moral and philosophical debates may ensue at the end of life, if a person can no longer talk or move while hooked up to life-­supporting machines; see Lock (2002). 18. From yet another perspective, things being the same is a product of their being in some way in touch, connected, brought together, if only in someone’s perception. This would suggest that all contact is derived in some sense from contrast. There is good reason to keep representations based on contrast and contact analytically separate, as I have done, to avoid collapsing them into one another, thus rendering them “as nonmysterious” (Taussig 1992:21). 19. In linguistic anthropology, “voice” is understood as “the linguistic construction of social personae,” which “addresses the question of ‘Who is speaking?’ in any stretch of discourse” (Keane 2000:271). In this understanding, “voicing contrasts” are essential because “no figure of personhood is typifiable as a discrete voice (of whatever type) unless it is differentiable from its surround” (Agha 2005:40). 20. That might offer proof of its word-­like separateness from immediate context, if not for the fact that when “iggle” comes up apart from tickling, it is during what appear to be utterly different circumstances, during meltdowns, for instance. 21. Seligman and Weller (2019:58–­59). 22. In his ethnography of speaking in tongues among Korean Christians, Nicholas Harkness (2021) points out that this practice has the effect of “targetting and rupturing” denotation in similarly productive ways. 23. Lawtoo (2013:10). 24. For this reason, Michael Taussig (1992) traces theories of mimesis to histories of

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colonialism and constructions of “savage” others. As he indicates, this also has corollaries in the association between imitation and construction of beastly nonhumans or animalization, as in the expression “monkey see, monkey do” or “aping.” In some ways, critiques of mere imitation also reflect the glottocentric obsession with language. For many modern authors, the mimetic faculty is somehow very human and yet something not to be trusted, a prelapsarian remnant of the many, the inhuman within us. In existential terms, the risk of mimesis is that it threatens the task of coming into authentic selfhood, which means moving away from the “dispersed, anonymous THEY” (Gordon 2013:176). 25. M. Y. Chen (2012). 26. While the first assumes an arguably Protestant notion of publicly avowed faith, the other three, at their root, are rendered impossible because they are authorized in some sense by the state through the medium of contracts, which establishes one’s ability to vote, to consent to sell labor, or to have sex. 27. See Simplican (2015). In part, this may because many societies (though not all) associate silence with passivity and docility, as in reverent parishioners at a religious service or disciplined soldiers standing at attention. This has also meant that silence is not always recognized as a successful form of counter-­power and protest (Seshadri 2012). 28. Seligman and Weller (2019:54–­55). 29. hooks (1991:2). 30. Freud (1920). 31. There is a well-­known feminist critique of Freud’s interpretation (Irigaray 1985). My reading of Charlie’s use of the slap here might be closest to Jay Watson’s understanding, which sees “fort/da itself as a child’s playful and deeply insightful meditation on the meaning of mothering” (1995:466).

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Index

64, 74, 84–­85, 91, 147; disability and, xvii–­xix, 7–­8, 193n7, 194n20, 197n20, 207n11; language in, xxi, 29, 31, 92, 108, 112, 174, 179, 194n10, 196n12, 214n19. See also ableism; Agamben, Giorgio; humans Applied Behavioral Analysis (ABA), 94–­95, 98–­99, 110, 207n24, 209n49. See also Autism Spectrum Disorder (ASD); control touch; disability arbitrarity, 9, 28, 62, 96–­100. See also language; symbols; words attention, 4, 88, 99, 101, 109, 118, 140, 152, 165–­66, 184, 209n10; attention-­getting gestures, 4, 10–­11, 115, 119–­20; caregiving and, 87–­88, 115–­16, 126–­27, 165, 186–­87. See also care; home signs audism, 4–­5, 14, 182, 196n7, 210n22. See also ableism; deafness; disability Autism Spectrum Disorder (ASD), xi–­xii, xiv–­xv, xix, 1, 5, 7, 18–­19, 28, 38, 42, 44, 49, 58, 70, 71–­72, 76, 77, 81, 83, 93, 109, 113, 128–­30, 146, 152, 156, 166, 173, 176, 177, 185, 187, 194n17, 195n2, 197n26, 205n48, 206n68, 207n24, 209n10. See also cognitive disability; disability autistic sociality, 7, 82–­83, 197n26. See also Autism Spectrum Disorder (ASD); Ochs, Elinor auto-­ethnography, x, xii, xiv, 11–­12, 16–­17, 19, 22, 53, 85, 184, 187, 193n2. See also ethnography Autosomal Sensory Meridian Response (ASMR), 74, 158, 205n51

ableism, xix, xxi, xxii, 2, 4, 7, 16, 29, 36, 46, 50, 53–­54, 89, 91, 156, 165, 173, 180–­82, 199n46, 202n49; compulsory able-­bodiedness, 38, 197n27. See also audism; disability; distantism; glottocentrism; humans Addams, Jane, 23, 164–­65, 212n31. See also care; James, William; pragmatism Agamben, Giorgio, xxi, 104, 122, 176, 195n31, 204n37, 210n18 aggression, 28–­30, 33, 36, 37, 39, 48, 53; compared with violence, 31, 47, 50; language and, 29, 42–­43, 54–­55, 200n7; meltdown as, 25–­27, 40, 42, 45, 54, 134. See also stance; violence alingual, xv, 1, 6, 12, 16, 89, 97, 108, 113, 117–­18, 173, 177, 179, 182, 212n21. See also language; voice America. See United States American Sign Language (ASL), xv, 1–­2, 9, 88, 127, 132, 186, 210n22. See also deafness animals, xxii, 2, 4, 27, 34–­35, 58–­59, 65, 96–­97, 102–­8, 114, 134, 175, 200n2, 208n32, 210n25; animalization, xxi, 12, 32, 37, 39, 66, 77, 112, 158–­62, 202n57, 203n8, 214n24; disability and, xviii–­xx, 13, 22, 33, 176–­77, 194n23; humanization, 8, 54, 58, 106, 137. See also dogs; experiments; humans; Kanzi the bonobo chimpanzee; Koko the gorilla; monkeys anthropological machine. See Agamben, Giorgio anthropology, 16, 22, 27–­28, 31, 57, 60, 235

236 

‹  index

Bates, Elizabeth, 7, 90, 197n24, 212n16 Bergson, Henri, 13, 119, 198n38. See also emergence; laughter Binghamton (New York), xvi, 17–­18, 38–­39, 98–­100, 110, 148, 169, 171, 190. See also Boards of Cooperative Educational Services (BOCES); Southern Tier (New York) Birdwhistell, Ray, 12, 18, 38, 47–­48, 197n35, 207n11. See also kinesics Blackness, 44–­45, 193n9; Black Lives Matter, 54; people of color and disability, 3, 38–­39, 77, 156, 195n6, 197n34, 202n49. See also positionality; wan chum; whiteness Boards of Cooperative Educational Services (BOCES), 38–­43, 126–­31, 189. See also Binghamton (New York); learning Buch, Elana. See generative labor Cannon, Walter, 22–­23, 32–­34, 47, 67, 96, 201n16. See also consciousness; fight or flight response; James, William; radical empiricism capitalism. See work care, 46–­47, 49, 51–­52, 53, 55, 61–­62, 69–­74, 83, 87, 89, 100–­102, 108–­10, 113–­14, 116–­17, 123–­24, 133, 137, 138–­ 39, 144–­47, 158, 161, 169, 175, 177, 179, 182, 183, 184, 185, 188, 193n7, 199n50, 199n56, 199n60, 200nn2–­3, 201n31, 203n2, 205n46, 209n10, 211n37 (chap. 4), 211nn3–­4 (chap. 5), 212n10, 213n35; care ethics, 147–­57, 162–­68, 170–­71, 212n31, 213n33; care regime, 29, 80; care work, 58–­59, 73, 74–­79, 106, 124–­ 31, 132, 189, 199n52. See also disability; sympathy Charlie (son), 29–­30, 36–­40, 42–­44, 50, 52, 57–­60, 62–­64, 68–­70, 71–­73, 76–­77, 79–­86, 87–­88, 93–­102, 111–­ 14, 115–­18, 119–­24, 126, 128, 130–­31, 140–­42, 144–­50, 152, 154–­58, 161–­65, 167–­71, 173–­88, 191, 195n33 (preface), 195n2 (intro.), 199n58, 201n24, 203n4, 206n2, 208n34, 208n44, 209n10, 210n12, 211n3, 215n31;

auto-­ethnographic vignettes about, 34, 35–­36, 37, 44, 45, 46, 50–­51, 52, 53–­55, 73, 74–­75, 82, 84–­85, 87–­88, 94–­95, 96–­97, 98–­99, 106, 110–­11, 115–­16, 119, 134, 135–­36, 137, 139–­40, 141–­42, 143–­44, 149–­50, 153, 155–­56, 158, 161–­62, 165–­66, 168, 171, 174, 181, 185, 186–­88. See also Autism Spectrum Disorder (ASD); auto-­ethnography; care; disability; home signs; Jeanne (wife) Chomsky, Noam, 6, 13, 90–­91, 97, 197n20. See also language; linguistics codes, 28, 45–­46, 164; linguistic, 127, 197n20; sharedness of, 6, 11, 14, 15, 32, 35, 38, 85, 120, 163, 198n38; universal, 26, 159. See also language; symbols cognitive disability, xvii–­xviii, xix, 5, 7, 19, 51, 58, 65, 69, 77, 79, 93, 100, 108, 109, 111–­12, 114, 116, 177, 194n20, 198n41, 199n46, 212n10. See also disability communication. See home signs; kinesics; nonverbal communication; semiotics consciousness, xxi, 5, 22–­23, 97, 183; care and, 199n52; stream of, 187. See also James, William; radical empiricism; reflexivity; representation; semiotics contact, 20, 31, 54, 57–­86, 93, 115, 118, 161, 182, 184, 203n3, 211n41; contact zones, 57–­59, 61, 65, 203n5, 203n10; home signs and, 9–­15, 58, 59–­65, 70–­73, 75, 76–­77, 79–­81, 82–­84, 95–­96, 97, 103, 116–­17, 121, 144, 153, 159, 174, 178–­79, 186, 197n31, 198n42, 214n18; queerness of, 81–­86, 205n52, 205n57. See also home signs; indexes; representation; semiotics; tickling contrast, 179, 197n31, 214n18; home signs and, 9–­15, 62–­63, 88, 95–­96, 99, 103, 121, 125, 153, 159, 174, 178; voicing contrast, 178, 214n19. See also home signs; icons; representation; semiotics control touch, 80–­81, 207n20, 209n49. See also Applied Behavioral Analysis (ABA); force signs COVID-­19, 17, 25, 35, 80, 85, 142, 181, 211n41

index 

creativity. See Bergson, Henri; emergence; home signs; innovative communication; James, William; Peirce, Charles; Tarde, Gabriel crips, 7, 197n27, 199n50. See also queerness deafness, 2–­3, 5, 195n31, 196n18, 207n12; Deaf Blind people, 3–­4, 9–­10, 12, 77, 83, 176, 196n7, 206n74; Deaf communities, 9, 173. See also American Sign Language (ASL); disability Derrida, Jacques, xx–­xxi. See also posthumanism development, 1–­2, 14, 23, 38, 42, 66, 80, 113, 117, 131, 135, 144–­45, 153, 155, 159, 164, 167, 169–­71, 196n15, 209n59; language, 6–­7, 11, 64, 70, 87–­114, 133, 137, 148, 167, 176, 178, 196n18, 197n24, 207n24, 208n34; linear model of, 3, 90, 93–­94, 100–­101, 147, 167, 176–­77. See also care; generative labor; learning; Picture Exchange Communication System (PECS); Sullivan, Harry Stack diapers. See pull-­ups; toileting disability, x, 2–­8, 16, 42, 70, 78, 92, 126, 155, 158, 166–­67, 181, 193n7, 199n46; justice, 3, 9, 39, 43, 147, 170, 182; narratives about, ix–­xxii, 38–­39, 53–­54, 146, 177, 200n3, 204n32; profound, xiv, xvii; scholarship, xvi–­xvii, xix–­xx, 7–­8, 49, 64, 113, 144–­45, 163, 182, 190, 194n15, 195n33, 196n15. See also ableism; anthropology; Autism Spectrum Disorder (ASD); cognitive disability; deafness disableism. See ableism dismodernism, 162–­68. See also crips; disability distantism, 4–­5, 14, 64–­65, 84–­86, 182, 196n7. See also ableism; audism; contact; glottocentrism; ideology dogs, 33–­36, 47, 50, 58, 60, 89–­90, 158–­ 59, 201n20, 203n8. See also animals Ekman, Paul, 30, 47–­49, 116, 176, 202n46. See also faces: facial expressions; police; psychology

›   237 emergence, 13, 21, 197n34, 198n38, 207n25. See also innovative communication; James, William; Tarde, Gabriel ethics, x, 41, 50, 54, 80–­81, 114, 122, 123, 144, 147–­57, 162–­70, 180, 201n19, 206n7, 211n31, 212n31; subjective agency and, 8, 135–­36. See also Addams, Jane; care; dismodernism; Keane, Webb ethnography, ix, xxi, 7, 12, 22, 51–­52, 61, 65, 69, 77, 92, 108, 146, 166–­67, 175, 190, 193n7, 199n60, 202n51, 212n21, 214n22. See also auto-­ethnography eugenics, xvii, 135, 194n19, 203n8. See also ableism; disability; violence experiments, 4, 7, 22–­23, 33, 47–­48, 67, 70, 91, 96, 109–­12, 114, 147, 195n34, 207n25; on ape language, 102–­8, 116, 131–­39; social interactions as, 12–­13, 20–­21, 132, 141. See also James, William; psychology; radical empiricism faces, 8, 25, 35, 50, 69, 79, 92, 97, 121, 125, 136, 141, 147, 155, 160–­61, 185, 187, 190, 197n20, 211n41; facial expressions, 3, 30, 47–­48, 52, 62, 81–­82, 144, 153, 165, 167–­69, 202n40, 202n46. See also attention; Ekman, Paul; kinesics Facilitated Communication (FC), 109–­ 11. See also hoax; language; Picture Exchange Communication System (PECS) family, ix–­xxii, 2, 3, 5, 9, 13, 16, 18, 20, 31, 37, 49, 57, 59, 60, 71, 76, 83, 89, 101, 105–­6, 117, 122–­23, 132, 141, 183–­84, 189, 198n39; ethnographic examples of, xiii–­xvi, 1–­2, 31, 42, 51, 69, 73–­75, 77, 85, 90, 115–­16, 120, 122, 124, 161–­ 64, 168, 193n7, 210n12, 215n31. See also care; Charlie (son); Jeanne (wife) feminism, x, xvi, 16, 104, 147, 164–­65, 193n2, 199n62, 211n38, 215n31. See also care; hooks, bell; positionality; wan chum fieldwork. See auto-­ethnography; ethnography fight or flight response, 32–­36. See also Cannon, Walter; dogs; James, William

238 

‹  i n d e x

gargalesis, 57–­71, 76, 81–­83. See also Hall, G. Stanley; knismesis; tickling gaze, 1, 109, 110, 209n10. See also attention; faces; home signs; kinesics; nonverbal communication gender, x, xv, 16, 196n15, 209n8, 211n2; caregiving and, 40, 76, 148–­50, 193n7, 203n2, 212n31; violence and, 25, 31, 42. See also feminism; positionality; wan chum generative labor, 18–­19, 144, 146, 152, 154–­ 57, 163, 166. See also care; work genre. See hoax; poioumenon; wan chum gestures, xv, 1–­14, 27, 31, 43, 47, 52, 54, 58, 63, 81, 88, 90, 98, 101, 102–­8, 109, 112, 122, 125–­27, 132, 147, 169–­70, 182–­ 83, 196n7, 197n35, 198n37, 202n46, 202n54, 204n28, 210n16, 212n25. See also home signs; kinesics; nonverbal communication; Picture Exchange Communication System (PECS) glottocentrism, 3–­5, 14, 22, 102, 133, 214n24. See also ableism; audism; distantism Goodwin, Marjorie, 76–­77, 123, 203n1, 211n41. See also haptics Gorilla Sign Language (GSL), 111, 132–­33, 138, 210n22 guilt, ix, xii–­xiii, xiv, 35, 37, 144, 149–­50, 158, 171. See also wan chum

hoax, 108–­14. See also ableism; Facilitated Communication (FC); psychology home signs: classification of, 1–­2, 16, 20–­ 22, 54, 61, 76–­77, 83, 89, 114, 118, 140, 157, 163, 165, 167, 177; compared with symbolic language, 9–­12, 26, 32, 35, 52, 100, 109, 152, 155, 180–­83; creativity and, 12–­15, 27–­28, 30, 41, 44, 55, 58, 75, 142, 170–­71, 186–­88; disability and, 2–­8, 83–­84, 124–­31, 145–­51, 169; examples of, xiii–­xiv, 1, 10–­11, 13–­14, 23, 34, 49–­50, 51, 57, 59, 62–­63, 71, 73, 79–­82, 87–­88, 99, 108, 115–­16, 119–­24, 139–­40, 141–­42, 144, 158–­61; home sign equipment, 92–­97, 101, 108, 114; hominid, 107–­8, 131–­39. See also contact; contrast; gestures; semiotics; trans-­ species pidgins hooks, bell, 184–­86, 193n2. See also auto-­ ethnography; positionality humans, 2–­3, 14–­16, 27–­28, 48–­49, 85, 112, 157–­59, 164, 175, 198, 209n8; as naturally speaking, 4–­5, 8, 91–­92, 102, 105, 113, 176, 180–­81, 208n34; outhumaning rhetoric, xvi–­xxii; in relation to nonhumans, xxii, 4, 7–­8, 13, 22, 34–­36, 43, 54, 58–­59, 61, 65–­66, 89, 102–­4, 106–­8, 112–­13, 123, 132–­38, 145, 152, 159–­62, 167, 169, 175, 177, 180, 195n31, 200n2, 201nn19–­20, 202n57, 203n8, 204n37, 207n10, 214n24. See also Agamben, Giorgio; animals; posthumanism hygiene, 21, 143–­71, 212n20. See also care; ethics; pull-­ups; toileting

Hall, G. Stanley, 23, 59, 66–­67, 70, 71, 73. See also consciousness; experiments; James, William; radical empiricism; tickling haptics, 57, 59, 64, 140; haptic sociality, 71–­77, 80, 123, 204n37, 206n68. See also Goodwin, Marjorie; home signs Haraway, Donna, x, 58–­59, 103–­4, 203n8, 210n25, 211n36. See also animals; contact; dogs; Koko the gorilla; posthumanism

icons, 52, 62, 93, 95, 98–­100, 107, 120–­ 21, 195n3, 197n31, 210n12. See also contrast; indexes; lexigrams; Peirce, Charles; semiotics; symbols identity. See Blackness; disability; feminism; positionality; wan chum; whiteness ideology, xxii, 4, 15, 20, 29–­30, 37, 64, 76, 85–­86, 89–­91, 100, 108, 113, 144, 151, 157, 169, 180–­82, 204n32, 206n4, 211n37. See also ableism; audism; distantism; glottocentrism; language

footing, xii–­xiv, 88, 194n10. See also auto-­ ethnography; poioumenon; text force signs, 30–­44, 108, 206n67. See also control touch; violence

index 

idiosyncratic communication, 4, 9–­12, 15, 26, 30, 37, 59, 61, 73, 77, 107, 108, 122–­23, 127–­28, 140, 160, 183, 195n3, 196n12. See also home signs “iggle,” 60–­65, 70, 74, 81, 178–­79, 204n28, 214n20. See also tickling; voice; words indexes, 31, 45, 52, 62, 63, 88, 95, 96, 105, 107, 121, 123, 154, 184, 195n3, 197n31, 198n42, 210n12. See also contact; icons; Peirce, Charles; semiotics; symbols Indigenous people, and disability, 193n9, 197n34. See also positionality; wan chum; whiteness in-­jokes, 119–­24, 139, 158, 188. See also laughter; sympathy innovative communication, xxii, 6–­7, 12–­ 15, 20–­21, 26–­27, 32, 92, 101, 107, 109, 111, 132, 159–­60, 171, 180, 183, 196n12. See also home signs; idiosyncratic communication intellectual and developmental disability. See cognitive disability Jackson, Aaron, ix–­xi, 51–­52, 61, 69, 166–­ 68, 193n7. See also care; disability James, William, 13, 22–­23, 32–­33, 66–­67, 96, 117, 121, 165, 187, 193n4, 198n38, 199n62, 201n16, 207n25. See also consciousness; experiments; pragmatism; radical empiricism Jeanne (wife), ix, xii–­xiii, xv–­xvii, xxii, 10, 13, 25–­27, 40, 46, 52, 53–­54, 60–­62, 73–­75, 86, 87–­88, 94–­98, 101, 110–­11, 114, 115–­16, 126, 128, 134, 137, 139, 142, 148, 149, 155, 158, 161, 164, 167, 170, 178–­79, 182, 186–­87, 191 Kanzi the bonobo chimpanzee, 104–­ 8, 113–­14, 132. See also Agamben, Giorgio; animals; experiments; humans; Koko the gorilla; language; lexigrams; Savage-­Rumbaugh, Sue; trans-­species pidgins Keane, Webb, 151–­52, 194n10, 200n7, 205n48, 207n10, 214n19. See also semiotics Keller, Helen, 3, 9–­10, 12, 176, 195n6. See also deafnesss; disability

›   239 killability, 26, 30, 43, 182, 203n8. See also ableism; eugenics; humans; violence; voice kinesics, 12, 15, 18–­19, 26, 29, 32, 37–­38, 45–­48, 77, 81, 85, 120, 140–­41, 163, 169, 182–­83, 197n35, 203n4, 207n11, 211n41. See also Birdwhistell, Ray; faces: facial expressions; home signs; nonverbal communication; proxemics Klotz, Jani, xvii–­xxi. See also anthropology; disability; humans knismesis, 67, 71–­76, 81–­83. See also gargalesis; Hall, G. Stanley; tickling Koko the gorilla, 104–­5, 107, 113, 116, 131–­ 39, 176, 210n25; Gorilla Sign Language and, 111, 132–­33, 138, 210n22. See also Agamben, Giorgio; animals; experiments; humans; Kanzi the bonobo chimpanzee; language; lexigrams; Patterson, Francine “Penny”; trans-­ species pidgins labor. See care; generative labor; work language, 1–­3, 6–­7, 11, 35, 59–­60, 68, 70, 80, 84, 88, 94, 112–­14, 136, 159, 174, 178–­ 79, 194n17, 200n7, 204n15; assumptions about, ix–­x, xvii–­xxi, 3–­6, 8–­10, 12, 14–­15, 22, 31, 32, 90–­92, 97, 100–­ 102, 105, 107–­14, 132, 140, 144–­45, 151–­ 52, 163, 180–­83, 196n12, 214n6, 214n24; languagelessness, xv, xvii, xxi–­xxii, 8, 13, 43, 54–­55, 89, 114, 132, 173, 175–­77, 180, 184; metalanguage, 28, 63, 123–­24, 151, 169, 202n57, 213n1. See also alingual; American Sign Language (ASL); Bates, Elizabeth; Chomsky, Noam; development; ideology; linguistics; Ochs, Elinor; stance; words laughter, 19, 28, 36, 89–­90, 129, 160, 210n22; home signs and, 119–­23; tickling and, 59, 60, 62–­63, 65, 67–­69, 79, 82, 139. See also home signs; sympathy; tickling law of effect, 96–­98, 102, 109, 132, 137, 153, 179. See also consciousness; learning; Picture Exchange Communication System (PECS); pragmatism; Thorndike, Edward

240 

learning, xiv, 14–­15, 17, 20, 23, 28, 32, 33, 35, 37–­44, 46, 61, 65, 69, 85, 120, 135, 140, 146–­47, 152–­54, 157, 159, 162, 168–­69, 183, 187, 201; home signs, 8, 9, 19, 36, 41–­42, 70, 71, 73, 78–­80, 82–­84, 124–­31, 141, 171; language, 2–­3, 6, 13, 21, 50, 64, 87–­114, 131–­34, 136, 148, 176, 178, 195n6, 204n26. See also care; development; experiments; language; law of effect; Picture Exchange Communication System (PECS); toileting lexigrams, 105–­7, 111, 132, 208n39. See also Agamben, Giorgio; animals; experiments; humans; icons; Kanzi the bonobo chimpanzee; Koko the gorilla; language; Savage-­Rumbaugh, Sue; trans-­species pidgins linguistics, 5, 197n20, 197n24. See also Bates, Elizabeth; Chomsky, Noam; language London, 17–­19, 42, 80, 83, 93–­94, 97, 101, 111, 169, 180, 201n24 Mead, George Herbert, 6, 21, 117, 196n18. See also pragmatism meaning, xv, xx, 1, 6, 9, 12–­13, 19, 31, 36–­37, 43, 57, 97–­98, 100, 116, 158, 160, 173, 174, 178–­79, 182, 184, 198n37, 206n68, 210n12, 215n31; co-­ construction of, xviii, 2, 8, 10–­14, 18, 26–­30, 44–­55, 59, 65–­86, 87–­89, 93–­108, 112, 119–­31, 131–­34, 140–­42, 143–­47, 165–­68, 171, 184–­86, 211n41, 212n25; life as meaningful, ix, xi, xx, 1, 171, 186–­88. See also consciousness; home signs; representation; semiotics method. See auto-­ethnography; ethnography; radical empiricism mimesis, 54, 72, 178–­80, 184, 214n24. See also contrast; icons; nonverbal communication; representation nonverbal communication, xiv, 2, 4, 7, 12, 14–­17, 28, 31–­32, 34, 36, 44, 55, 57, 62, 64, 66, 81, 139, 144, 155, 158, 180, 182–­83, 197nn34–­35, 198n37; disability and, xi–­xii, xvi, 18, 45–­47, 51, 69, 71, 77–­79, 94, 101–­2, 104, 109–­11, 113, 126–­31, 150–­51, 166, 182, 207n24;

‹  i n d e x misrepresentation of, 30, 46–­50, 52, 126, 140, 148, 173, 176–­77, 180. See also faces: facial expressions; gestures; home signs; hygiene; kinesics; proxemics; tickling Ochs, Elinor, 7, 90, 101, 194n17, 197n26, 205n48. See also autistic sociality overmining, 20–­22, 114, 131, 133, 199n61. See also home signs; ideology; undermining paralanguage. See kinesics; nonverbal communication Patterson, Francine “Penny,” 105, 132–­39, 210n25. See also Koko the gorilla Pearson, Thomas, ix–­xi, 193n7, 194n19, 197n35. See also anthropology; disability Peirce, Charles, 13, 22, 35, 117, 121–­22, 197n31, 198n38, 199n44, 207nn24–­25, 210n14. See also icons; indexes; James, William; pragmatism; semiotics; symbols pets, xxii, 34, 58, 133, 159. See also animals; care Picture Exchange Communication System (PECS), 91, 93–­102, 103, 105, 109, 111–­12. See also development; Facilitated Communication (FC); hoax; language poetics, xii, xiv, 16–­17, 31, 167, 179, 194n11, 210n16. See also auto-­ethnography; language; text poioumenon, xii–­xiii. See also auto-­ ethnography; poetics; text police, 26, 29–­30, 44–­51, 53–­55. See also aggression; Ekman, Paul; killability positionality, xii, xiv, 16–­17, 50; privilege and, x–­xi, 16, 93, 181, 193n2, 193n7, 193n9, 196n15. See also Blackness; gender; Indigenous people, and disability; race; wan chum; whiteness posthumanism, xx–­xxi. See also animals; Derrida, Jacques; Haraway, Donna; Wolf-­Meyer, Matthew pragmatism, 22–­23, 97, 117, 137, 165, 195n34, 199n62, 212n31. See also Addams, Jane; James, William;

index 

Peirce, Charles; Sullivan, Harry Stack; Thorndike, Edward privilege. See positionality; wan chum; whiteness proxemics, 12, 85, 206n74. See also contact; distantism psychology, xi, 5, 7, 22–­23, 30, 48, 59, 64, 65–­67, 70, 71, 75, 77, 86, 94–­95, 97, 102, 110–­11, 117, 123, 148, 151, 159, 197, 207n24. See also Cannon, Walter; Ekman, Paul; experiments; Hall, G. Stanley; James, William; Sullivan, Harry Stack pull-­ups, xiii–­xiv, 121, 143–­44, 155, 162, 164, 167–­69, 171. See also development; thrownness; toileting queerness, x, xvi, 7, 21, 59, 65, 74–­77, 81–­ 86, 197n27, 205n51, 205n52, 205n57, 209n2. See also crips; positionality; tickling; wan chum race, 29, 50, 196n15, 199n46, 202n57, 203n5. See also Blackness; Indigenous people, and disability; postionality; wan chum; whiteness radical empiricism, 22–­23, 66, 117, 159, 193n4, 195n34. See also Addams, Jane; Cannon, Walter; consciousness; experiments; Hall, G. Stanley; James, William; pragmatism; Thorndike, Edward reflexivity: self-­reflection and, 5, 8, 16, 28–­29, 67–­68, 123–­24, 136, 151–­52, 155, 169, 179–­80; writing and, x–­xv, 16. See also auto-­ethnography; language; poetics; poioumenon; text representation, 31, 45, 54, 62, 105–­8, 151, 174, 176, 178–­80, 197n31, 198n42, 201n13, 210n25, 213n5, 214n18; of disabled persons, ix–­xxii, 16, 51, 53, 76, 126, 136, 170, 181, 199n46, 204n32. See also consciousness; contact; contrast; icons; indexes; language; meaning; semiotics; symbols risk, xiv–­xv, 134, 148, 156–­57; communication and, xix, 20, 22, 26, 63, 70, 214n24. See also home signs; overmining; undermining; violence; voice

›   2 41 Rutherford, Danilyn, 70, 94, 114, 118, 190, 194n20, 195n33. See also sympathy Savage-­Rumbaugh, Sue, 103–­8, 114, 132–­33, 197n33. See also Agamben, Giorgio; experiments; humans; Kanzi the bonobo chimpanzee; language; lexigrams; trans-­species pidgins school. See learning semiotics, 2–­4, 8, 9–­11, 15, 20–­21, 29, 32–­ 33, 35, 42, 48, 52, 54–­55, 57–­60, 64, 70, 91, 95, 101, 104, 106, 109, 112–­14, 121, 123, 127, 147, 151, 154, 163, 169, 174, 183, 197n31, 197n33, 197n35, 198n42, 199n44, 203n2, 208n32, 210n12, 210n14, 213n5. See also contact; contrast; icons; indexes; Peirce, Charles; representation; symbols significant others, 6, 115–­42. See also Sullivan, Harry Stack; sympathy; Woolf, Virginia signs. See home signs; icons; indexes; meaning; nonverbal communication; Peirce, Charles; representation; semiotics; symbols; trans-­species pidgins sleep, ix, xii, 74–­75, 83, 143, 148, 188 Southern Tier (New York), 17, 39, 80, 126, 129, 180. See also Binghamton (New York) stance, x, 16, 29–­30, 33, 35, 47, 50, 53–­ 54, 144, 151, 169. See also aggression; language Sullivan, Harry Stack, 23, 117–­19, 122, 137, 139, 142, 176, 209n2, 209n4. See also James, William; pragmatism; queerness; significant others symbols, 4, 27–­28, 31, 43, 44, 55, 91, 121, 123–­24, 156, 176–­77, 182, 201n13, 213n5; disability and use of, xvii–­x x, 52, 93–­102, 111, 135–­36, 163; kinesic, 183; language and, xxi, 6, 8, 9–­11, 13, 62, 111, 132, 174, 178–­79, 208n27, 210n22, 214n6; learning, 6–­7, 93–­ 109, 208n34, 208n39. See also icons; indexes; language; Peirce, Charles; Picture Exchange Communication System (PECS); representation; semiotics

242 

‹  i n d e x

sympathy, 21, 59–­60, 116, 118, 122–­33, 138–­ 40, 155, 165, 170, 179–­80, 190, 209n8. See also overmining; Rutherford, Danilyn; Sullivan, Harry Stack; Woolf, Virginia tablets, xii, 36, 87–­88, 94–­96, 98–­101, 115, 155, 173. See also Facilitated Communication (FC); home signs; Picture Exchange Communication System (PECS) Tarde, Gabriel, 13, 68, 198n38. See also emergence; innovative communication; James, William text, xii–­xv, xxii, 16–­17. See also auto-­ ethnography; poetics; poioumenon; words Thorndike, Edward, 22–­23, 96–­97, 100, 102, 109–­10, 132, 137, 153, 207nn24–­25. See also James, William; law of effect; radical empiricism throwing, xiii, 42, 51, 80, 99, 134, 159–­62, 171, 212n21 thrownness, 157–­62, 164, 167, 169–­70, 211n2. See also toileting tickling, xvi, 20, 21–­23, 57–­86, 93, 103, 119, 126, 139, 150, 152, 157, 178–­79, 187, 199n58, 204n34, 205n46, 206n68, 208n44, 214n20; queerness of, 59, 65, 74–­77, 81–­86, 205n52. See also contact; gargalesis; Hall, G. Stanley; knismesis; undermining toileting, ix, xii–­xiv, 17, 21–­22, 120–­22, 143–­53, 155, 157–­58, 161–­71, 188, 211n3, 212n10. See also pull-­ups; thrownness trans-­species pidgins, 103, 134, 160. See also Kanzi the bonobo chimpanzee; Koko the gorilla; throwing undermining, 20, 22, 26, 199n61. See also home signs; overmining United States, xvii, 29–­30, 51, 66, 69, 93, 97, 101, 110, 114, 120, 146. See also Binghamton (New York); police; Southern Tier (New York) violence, xix, 20, 25, 30–­32, 35, 37–­38, 42, 52, 57, 61, 116, 134, 136, 138–­39, 180, 200n2; sensory, 185; sexual, 38–­39, 78,

135–­36, 138, 149–­51, 156–­57; symbolic, 31, 42, 44, 64, 177, 198n41, 202n55; systemic, xix, 4, 29–­30, 39, 44–­51, 53–­54, 156; uncertain definitions of, 21, 26–­29, 34, 36, 42–­43, 51, 54–­55, 190, 201n13. See also aggression; care; eugenics; police; undermining voice, 113, 144, 153, 159, 183–­84, 194n10, 214n19; people robbed of, 44, 50, 54; technical mediation of, 88–­91, 93, 102, 112, 113–­14; vocalization, 5, 10, 13–­14, 23, 52, 62–­63, 65, 80, 90–­91, 104, 120, 173–­88. See also contrast; overmining wan chum, ix–­xxii, 13, 16, 53, 76, 85, 93, 129–­30, 169, 174, 181, 182, 185, 193n3. See also disability; gender; positionality; race; whiteness waste. See pull-­ups; toileting whiteness, ix–­xi, xv, 3, 16, 18, 19, 38–­39, 40, 41, 43, 44, 45, 71, 77, 78, 79, 110, 124, 126, 133, 148, 193n3, 193n8, 195n6, 197n34. See also Blackness; race; wan chum Wolf-­Meyer, Matthew, xx, 55, 182, 190, 197n20, 214n6. See also posthumanism Woolf, Virginia, 23, 139, 209n8. See also sympathy words, 5, 22, 31, 41, 50–­51, 57, 58, 59, 60, 62–­64, 70, 74, 92, 125, 151, 158, 171, 173, 178–­79, 181–­84, 199n58, 213n42 (chap. 5), 213n5 (“Mmmmmm”), 214n20; development of, 93–­108, 131–­34, 178, 186–­87; inadequacy of, xi, 16, 47, 51, 118, 174, 211n41; nonhuman, 204n28; politics of, 21, 45–­46, 54, 108–­14, 134–­ 39, 175–­77, 186; without, xii, xvii, xx, 1–­2, 5–­6, 12, 14, 15–­17, 19–­20, 48, 52, 65, 145–­46, 149–­50, 153, 156, 166, 177, 182. See also “iggle”; language; Picture Exchange Communication System (PECS); symbols work, ix, xii, xvi, 2, 12, 17–­19, 21, 37–­44, 50–­51, 58–­59, 71, 75, 77–­80, 88, 115, 122, 124–­31, 132, 145–­53, 161, 165–­67, 181, 186, 189, 201n19. See also care; generative labor writing. See auto-­ethnography; poioumenon; text