Home Signs: An Ethnography of Life beyond and beside Language

By Joshua O. Reno

An intimate account of an anthropologist’s relationship with his non-verbal son and how it has shaped and transformed his understanding of closeness and communication.

Home Signs grew out of the anthropologist Joshua Reno’s experience of caring for and trying to communicate with his teenage son, Charlie, who cannot speak. To manage interactions with others, Charlie uses what are known as “home signs,” gestures developed to meet his need for expression, ranging from the wiggle of a finger to a subtle sideways glance. Though he is nonverbal, he is far from silent: in fact, he is in constant communication with others.
 
In this intimate reflection on language, disability, and togetherness, the author invites us into his and Charlie’s shared world. Combining portraits of family life and interviews with other caregivers, Reno upends several assumptions, especially the idea that people who seem not to be able to speak for themselves need others to speak on their behalf. With its broad exploration of nonverbal communication in both human and nonhuman contexts, Home Signs challenges us to think harder about what it means to lead a “normal” life and to connect with another person.

• Language: English
• Publisher: University of Chicago Press
• Release date: Mar 21, 2024
• ISBN: 9780226831251

Joshua O. Reno

Joshua O. Reno is a Professor at Binghamton University, US. A socio-cultural anthropologist, he is the author of Waste Away, Military Waste and co-author of Imagining the Heartland. He co-edited the collection Economies of Recycling.

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Home Signs

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

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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

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Contents

Preface: Writing in the Wan Chum Genre

Introduction

Chapter One. Aggressive Stance

Chapter Two. A Ticklish Subject

Chapter Three. Technically Speaking

Chapter Four. Significant Others

Chapter Five. Cacas Ergo Sum

Mmmmmm

Acknowledgments

Notes

Bibliography

Index

[ Preface ]

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 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 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.

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 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 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 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 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 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’ [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.

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.

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