The Persistence of the Bad S

In August 2020, my sister sent me a large manila envelope. She had found a folder of my audiograms and Individualized Education Plans from elementary and middle school and offered to mail them to me. I opened the envelope and slowly disintegrated while examining this file self, these representations and quantifications of my capacities and abilities. In addition to audiograms from different years, there were multiple copies of an IEP from 1990, when I was in sixth grade. The original was tissue-paper thin and included a number of assessments and goals for improving practices related to lipreading, auditory discrimination, and articulation. For example, one “functional description of performance” stated: “Michelle articulation skills are adequate for conversation, but she tends to omit the final [s] and has difficulty with [s] blends during reading and conversation. Auditory discrimination skills are weak.” The goals in response to this assessment were “Michelle will improve her articulation of final [s] in reading and [s] blends during reading and conversation. Michelle will improve her auditory discrimination skills using blends and sibilants words.” Those Ss! (Yes, my name was misspelled throughout.)

Another goal focused on my ability to use visual, facial, and contextual clues and cues and stressed that my lipreading needed to improve. And yet another goal stated that I had to develop my auditory discrimination skills and practice listening through “audition alone,” without lipreading. My IEP goals were, bluntly stated, that I needed to improve my Ss and become a better lipreader and listener. After reading the IEP, I felt undone—undone for the twelve-year-old child who had to sit through IEP meetings year after year; undone for my mother, who had to engage in yearly bureaucratic dances; and undone that a system like this could exist, in which strengths and weaknesses and goals and outcomes could revolve around Ss and sibilants, speechreading ability, and maximization of audition.

I wrote to my “hearing teacher” (this is what I called her, her official title was itinerant teacher of the deaf), now a dear friend, who created these goals to ask her what she thought thirty years later. She replied, “Remember, we didn’t have cochlear implants that were working well,” and “You actually did improve your auditory skills because you were able to take things like nasal murmurs and understand that it was an M or an N, or an acoustic burst and know it was a plosive,” and “You had to work on your lipreading skills because what if your hearing aids stopped working?” Finally, and perhaps defensively: “Do you remember your goal from the last year you had hearing services? The goal for you was that you would balance a checkbook?” As I remember that goal, it was that I would successfully use an ATM—but in any case, our conversation, over text, was unsatisfying. I felt that my old teacher and dear friend was stating that I was ungrateful, not understanding that my IEP had been constructed during a time of different sensory infrastructures and more limited ideas of what deaf children’s potential could be.

Goal setting establishes and enacts potential. However, goals are frequently constraining in how they frame development and enact relations; they are often unconcerned with individual children and their specific selves beyond the case file. Goals are also a key modality through which families, audiologists, and speech and language pathologists work to enable deaf children to become sensorially normal or to pass as normal. My hearing teacher reminded me that cochlear implants were not as widely available when I was a child. The future that we have now, she pointed out, was unimaginable back then, and IEPs are different in the present because of this technology. Her statement reminds me of two others that I heard often from audiologists and AVT practitioners in India and the United States: “It’s not the same old deafness,” and “Today, there is no reason we should not expect a deaf child to have an excellent listening and speaking outcome.”1 These statements suggest that children are making their Ss fine now. Are they? And why is this an important goal?

The case file, and the expectations and goals within it, produces and forecloses forms of life. The file self scaffolds how the world is sensed and inhabited. Consider the following case of a nearly eight-year-old girl who was implanted at two and a half years of age. I did not meet the girl, but I viewed her file at an Indian clinic in 2019, and I felt an affinity with her as I read its contents. The case notes included the girl’s chronological age, her implantation age, and her developmental age in terms of listening, receptive and expressive language, cognition, and social communication. In all of these categories she was at most thirty-six months old. (As discussed in chapter 3, families must negotiate and attend to deaf children’s multiple chronological and developmental ages.) The girl’s provisional diagnosis was “delayed in receptive and expressive speech and language skills with cochlear implant.” The case notes stated that the girl typically used gesture to communicate and she was predominantly nonverbal. Her oral articulations were “normal in appearance and function.” She could repeat words such as aam, kela, mama, papa, and didi (mango, banana, mama, papa, and sister), which she understood through lipreading. The girl’s short-term goals were to discriminate between different spoken words and produce utterances reflecting two-word semantic relationships, both with 80 percent accuracy. Her long-term goals were to increase discrimination of different stimuli and to develop an understanding of and produce vocabulary in diverse communicative contexts. Such goals—not so different from mine when I was a child—surface questions about whether achieving them is important for building and sustaining relations and worlds.

Open Sets

My IEP, with its focus on specific senses and ways of communicating, made me disintegrate. But scholars have argued that deaf people process and learn through multiple sensory integration. All of the senses available to a child work together and aid the child in processing the world. Scholars have moved away from a competitive model of sensory processing to one that looks at the ways that the senses complement each other and are intertwined, creating intersensory engagement.2 Why, then, do AVT practitioners focus on a single sense, even initially? Why is becoming unisensory a desired goal? Throughout this book, I have argued that we need to look at deaf children and adults, and all people in general, as multisensory, multimodal, and engaged in multipersonal interactions. I have also argued that we must attend to desired and actual sensory infrastructure because it enables the creation of different sensory ways of being in the world. Infrastructure does more than get under the skin (Fennell 2015); it creates the actual conditions of possibility for sensing and inhabiting the world.

I think about “closed sets” and “open sets” as used in sound booth speech discrimination and perception tests. In tests with both kinds of sets, the person being tested must repeat the words, phrases, or sentences spoken, either in silence or with background noise, by disembodied voices piped into the booth. In closed sets, which are often used in studies of the efficacy of cochlear implants, there are limited sounds, words, phrases, or sentences from which to choose. The person being tested is sometimes “primed” so that he or she has a sense of what words or sentences are going to be used; there is a closed set of options. The ultimate goal for a person being tested, however, is to score well on open sets, which could be any sound, word, phrase, or sentence, with no structure or context given. Ideally, the person is able to hear what is said and repeat it without knowing from the outset what the nature of the sound, word, or conversation might be. The AzBio test, for example, which tests speech discrimination in people with hearing aids and cochlear implants, includes sentences such as “There are several types of tuxedos.”

Beyond tuxedos, how might we hold on to the concept of open sets as a scaffolding or infrastructure through which deaf children and adults can interact with the world? And how might an open set ideally include (less linguistically bounded) communication that is multisensory and multimodal? I want to leave room for sensory unruliness and for not knowing what outcomes might take place. I wish to see a proliferation of outcomes, beyond the finite number of communication outcomes discussed in chapter 2. Surely there are more than four ways (listening and spoken language, a bilingual-bicultural approach using sign language, cued speech, and total communication) to communicate. I see value in total communication as a philosophy that involves all of the senses and orienting to children and others more generally based on what they need and when they need it.

Haraway (2007) argues for “becoming with” as an open-ended process that does not yield guaranteed results or harmonious wholes.3 In this book, I have focused on the becoming that takes place through cochlear implants and the ways that such becoming always exists—and is valued—in relation to a teleological normal. I have endeavored to think about the work of multisensory, multimodal, and multipersonal engagement in enabling different kinds of becoming that might upend taken-for-granted hierarchies of sensory and communicative value. I have argued that becoming normal involves a narrowing or contraction of senses, modalities, and ways of relating to others; it constricts the social.4 Haraway reminds us that “becoming with” is ultimately a project of “becoming worldly,” which involves interaction in and through diverse sensory modes, including vision and touch (287). “Becoming worldly” moves us beyond the constraints of normative modes of engagement to thinking copresence with others differently.

“Becoming with” and “becoming worldly” offer other possibilities for unknown and emerging forms of difference that do not aim for predetermined outcomes (also see Malabou 2008, 5). Howes (2006, 382) points out that responses to multisensory signals might produce unknown outcomes and notes, “The response to the multisensory signal is new, qualitatively different from the response to either of the unisensory components, and thus demonstrates emergence.” Emergence is similar to open-ended becoming. How might we rewrite the scripts of what it means to become deaf, hearing, normal, and disabled and not include teleological goals and conclusions? Such unknown futures are important, especially at a time when statements such as “Today, there is no reason we should not expect a deaf child to listen and speak” are routine. At the same time, we must examine our attachments to (stabilizing) these categories and the political, social, and economic forces that allow for their ongoing production and maintenance.

I call for a deaf futurism (Mills 2012) that is not teleological and open to multiple permutations of becoming. The concept of deaf futurism is appealing in that it insists that there is a place for deafness in the present and future. While Mills (2012, 336) addresses deaf futurism primarily as an investment in technology, posthumanism, and the importance of deaf people having a seat at the table to develop technologies that work for them, I am interested in an open-ended deaf futurism that enables the full range of deaf people’s multisensory and multimodal engagements with the world. As I see it, deaf futurism involves a demand for sensory infrastructures that maximize potential (and not compensation) in all ways.

In 2021, I met a group of Indian young adults in their twenties who were implanted as children. They are considered “star cases” by cochlear implant corporations, which often invite them to be featured in promotional videos or to speak to prospective families. These implant users have all graduated from university and are employed or in graduate programs, and as such, they represent successful cochlear implant outcomes. However, these people refuse to be what they consider “inspirational porn,” and they denounce the ableism of cochlear implant corporations and society more broadly. They have also claimed disability and identify as deaf and disabled. They value their cochlear implants while also critiquing the ways that “success” means adhering to a narrow normative path, and they foreground the significant work required to learn to listen, speak, and negotiate everyday life. They embrace captions and sign language and call for more expansive identities and social and communicative practices. They model these practices in whimsical and humorous videos using special effects in which they call for disability pride, “bling up” their hearing devices, and remind people that disability experiences are unique and valid (and they also poke fun at families who tell deaf children “never mind” instead of repeating themselves). Consider too a recent scholarly and activist project called the DeafSpace movement, headquartered at Gallaudet University, which has envisioned infrastructure modeled on deaf people’s social, moral, political, and economic practices.5 Project recommendations include circular seating in classrooms and outdoor nooks to allow for clear sight lines, pedestrian pathways that are wide enough to allow people who are signing to walk together, glass elevators and doors, and floors that allow vibrations to travel. The DeafSpace project is not concerned with disability or deaf access, but rather with deaf being and flourishing; it is a moral project, and infrastructure is a key component.6 A commitment to deaf futurism allows us to include multiple sensory, social, and communicative orientations as normal and to see deaf as normal as well. Deaf futurism opens up possibilities for different kinds of becoming—and flourishing—beyond sensory normality.

Old Stories and New Goals

In October 2020, I attended a Zoom conference panel titled “Importance of Rehabilitation for Those with Hearing Loss in Developing Countries.” The panel moderator, who was from India, stressed that rehabilitation’s goal should be to restore or provide capacities and capabilities, with the spoken assumption that these were listening and spoken language capacities and capabilities. For this speaker, successful rehabilitation meant following a single path toward inserting a child into the currently existing social, sensorial, and communicative order. Indeed, all of the speakers discussed listening and spoken language, and some focused on auditory verbal therapy. However, there was a specter, a real bogeychild, haunting this panel: “the five-year-old child without language.” Such a child, ostensibly diagnosed late and without any kind of appropriate intervention, was invoked but not discussed; this child could not be accommodated within the re/habilitation trajectories foregrounded. Those present at the conference could not imagine goals for this child; they were so fixed on ideas of listening and spoken language that any other way of sensing and communicating in the world was impossible.

The imaginary of this five-year-old child drove home the ways that ideas of re/habilitation, capabilities, and capacities are fixed. This five-year-old child was not seen as malleable and thus represented a hard limit to discourses about potentiality. Professional investment in cochlear implantation and auditory verbal therapy has erased a history and present of other sensory and modal possibilities to the degree that a binary is created between a “child with no language” and a “cochlear implant user who listens and speaks.”7 What, in contrast, would it mean to consider this child as possessing the most potential, in that new paths and possibilities are yet to be made? To consider this, we need to reimagine goals, potential, and re/habilitative trajectories and detach them from normative understandings of becoming and being normal.

I met many such children throughout the course of my research, children who were five and older, said to have “no language,” who came to clinics for the first time or had returned after some time had elapsed since previous visits. Their parents often carried copies of medical files and school records proclaiming that their children had multiple disabilities, “low IQs,” or “behavior issues.” With the parents’ consent, I pored over these documents and marveled at the conclusions drawn as well as the kinds of futures confidently projected and foreclosed. Audiologists and speech and language pathologists invariably responded to my curiosity and concern with comments such as “There are so many children like this. So many identical stories. We see this all the time.” These flat and resigned statements unsettled me, as my observations and talks with the families always revealed unique details, even if what all the families desired was ultimately the same. Discussions about these children typically involved recommendations for vocational training and ways of ensuring financial productivity and independence. The goal was for them to be able to pass as normal and engage in normal practices, in addition to maximizing their ability to lipread and utter sounds or words. The complexity of their lives was ignored, and the possibility of open-ended becoming, or any kind of becoming beyond sensory normality, was foreclosed.

In an essay on biopolitics, Michel Foucault (2008, 229) writes of an intensified focus on human capital, or approaching humans as “abilities-machines,” under neoliberal political economic regimes. Theories of human capital (Becker 1962; Becker, Murphy, and Tamura 1990) focus on ability, specifically the ability to earn an income, and are concerned with producing (certain kinds of) skilled people who can be assimilated into capital. As Foucault notes: “Ability to work, skill, the ability to do something cannot be separated from the person who is skilled and who can do this particular thing” (224). Foucault pushes us to see the boundaries of “abilities-machines” and to consider what kinds of abilities and forms of life might be illegible or unassimilable within such a machine. He asks: “What type of stimuli, form of life, and relationship with parents, adults and others can be crystallized into human capital?” (230).

This question is key: What about stimuli and signals that cannot be neatly categorized or crystallized in their unruliness? How might creating boundaries around what can and cannot be considered a signal constitute a form of violence? In this book I have argued for expanding how we think of stimuli and signals beyond listening and spoken language, and I have foregrounded the importance of relational infrastructures in moving beyond narrow definitions of ability. I have focused on relationships between mothers and children, families and devices, children and the state, and corporations and the state, in addition to others. I have examined the ongoing work and investment required to maintain senses, relationships, capacities, skills, devices, and infrastructures. I join with disability studies scholars and disability anthropologists to critique how we think of capital and its crystallization and the ways that deaf and disabled people are seen as both objects and subjects of capital.8 A project of becoming normal is a project of becoming appropriately malleable and becoming (available to) capital.

Deaf life, and all life, is embedded within different and sometimes ideologically competing sensory infrastructures. I have argued that we must attend to the relational work required to maintain these infrastructures. What is at stake is not only a child’s identity or the child’s ability to become deaf, hearing, or normal; these are experiences, capacities, and categories that are constantly in flux and do not occur solely within an individual child’s body or sensory configurations. Multiple normals, as a sensibility, moves us beyond categorizing people as hearing or deaf and turns our attention to the existence of diverse signals embedded and crystallized and/or ignored and devalued within hierarchies of value. What is ultimately at stake is our ability to stretch the social to include diverse signals and stimuli, to sense the social differently. In doing so, we need to work toward infrastructure designed to cultivate different ways of sensing, communicating, and relating. This would be open-set infrastructure that is not concerned with mitigating or compensating for deficiency or lack—or with whether Ss are uttered properly.