Becoming What?

During the summer of 2019, I met Neera, the first pediatric cochlear implant case in India. No longer a child, she was now a lively and warm young woman in her mid-twenties. While it feels strange to call her the first pediatric case, this is how I was introduced to her, and it was a significant fact: for Neera herself, for her family, for the surgeon who did the implantation, for the corporation that made the device, and for the Cochlear Implant Group of India, a professional association made up of surgeons, audiologists, and speech and language therapists. On the day of our meeting, I arrived at Neera’s family’s house before she had returned from work at an information technology company located on the outskirts of Pune. I chatted with her mother and father as we waited for her to arrive. When she finally reached home, expressing exasperation about the traffic on the roads, we launched into a negotiation about where each of us—Neera, her mother and father, and I—should sit on the two sofas and chairs in their living room. It felt like we were playing a complicated game of chess, trying to maximize lipreading opportunities for both Neera and me, although no one else in the room initially realized that I was concerned about where I would sit.

I finally said that I too needed to lipread, and everyone looked at me. “No!” exclaimed Neera’s mother. “You have a hearing impairment too?” asked Neera. I explained that I had bilateral cochlear implants (I had mentioned this in my initial correspondence with Neera’s mother, but I guess it had not registered). At that moment, Neera and her family expressed great surprise and peppered me with questions about how old I was when I had become deaf, when I had gotten my implants, when I had acquired language, and what my audiogram looked like.1 Neera’s mother said to me, “I should interview you now!” This was a scene that played out often during my research. For example, a research assistant and I talked to families in a hospital waiting room in Delhi, and my colleague ordered me, “Show them your implant!” Another time, I sat with the same colleague as she translated for me and a group of Tamil-speaking mothers of deaf children at an early intervention program in Chennai. During our conversation, she told the mothers that I had implants. They asked me questions, and one mother said that she was happy to meet me because she had never met an adult with a cochlear implant before, and she worried about what her child’s future would be like. Her child was three years old and had recently been implanted. This mother’s statement reveals a central theme and tension in this book: despite the increasing presence of cochlear implants, the futures of implanted children are unknown. What can an individual implanted child become, and to what extent are that child’s current paths and future trajectories shared with other deaf people with or without cochlear implants?

There have always been deaf people in India, and deafness intersects with other important categories—such as class, caste, gender, and geographic location—to create different life trajectories. However, while I was conducting research for this book and learning about central and state government cochlear implant programs in India and the growing private cochlear implant market there, people constantly told me that cochlear implants have rewritten the script of what deaf children can become. Cochlear implants have inscribed (Akrich 1992) deaf children and their families, the state, surgeons, audiologists, and speech and language pathologists into roles that are different from those they previously occupied; for example, the state has become a sensory state, mothers have become therapists, and therapists have entered into international certification regimes. Through engagement with cochlear implants, these actors have become other than they were before. While becoming is often discussed in a hopeful and open-ended register, I see it as a pluripotent process that offers both possibilities and constraints.

In this book, I attend to becoming normal, specifically in relation to sensory normality. I argue that normalization leads to, and is a form of, narrowing. Becoming normal—a key promise of cochlear implant technology—constrains people’s sensory, modal, and relational engagements. Normative sensory configurations and communicative practices based on listening and spoken language are the desired outcomes after cochlear implantation. These desired outcomes are tethered to ideas and ideals about a “right way” to sense, communicate, and relate to others. The Indian state, families of deaf children, medical professionals, and educators, among other stakeholders, increasingly expect that these normative outcomes will occur. They work to foreclose other outcomes for deaf individuals, such as becoming sign language users or orienting to others through vision and touch. As cochlear implants become more ubiquitous in India, sensory, modal, and relational possibilities for deaf children and those with whom they engage diminish. Sensory normality, as a desired goal and outcome, results in a contraction rather than an expansion of ways of engaging with the world.

Disability is a privileged site of engagement and intervention for the Indian state, and the central government’s cochlear implant program is the state’s most expensive intervention and investment in individual children. This expense is notable in that while the state constantly seeks ways to maximize the health of its citizens on the population level in order to increase productivity and independence, cochlear implants are an investment in individual children, and they represent a belief that such children can become normal through the implantation of a sense (of hearing). Because of cochlear implants, deafness, unlike other disabilities, is seen as malleable and fixable. Consider, for example, that in 2021, the chief minister of the state of Andhra Pradesh announced that because of cochlear implants, the state could become free of deaf people (Dara 2021). The fact that cochlear implants are so attractive—and the Indian government is working to manufacture its own indigenous implant—demonstrates a commitment to forms of normative becoming as well as a conviction that such becoming is possible through intervention in and on an individual body and sense.

A surgeon at a prestigious government hospital in Delhi told me, “The cochlear implant is the best solution that we have right now for disability.” In speaking about “disability” broadly, the surgeon was pointing out the particular potentiality of deafness in relation to other disability categories. The surgeon’s comments highlighted that cochlear implants are especially appealing because the “solution” they offer is that they activate the potential to become normal. In doing so, they activate (and deactivate) the potential of specific sensory, modal, and relational configurations. They also activate the potential of the state to expand its reach into the body and senses through its relations with multinational biotechnology corporations.

One of the first questions Neera asked me after we figured out our seating arrangements was which cochlear implant processor I had. She wanted to know which corporation made my implant (there are four major multinational cochlear implant manufacturers operating in India, three of which make devices that have been approved by the United States Food and Drug Administration). We learned that we both had implants made by a company named Cochlear, but that the implant processor model I had was two generations newer than hers; she had the Nucleus 5 and I had the Nucleus 7. Neera asked me how the N7 differs from the N5 (as they are called). Neera had “upgraded” to the N5 after previously using older versions of the processor; her parents had taken out a loan to purchase it. Neera’s initial questions were not so surprising, given that cochlear implant manufacturers often use the language of “family” when discussing their recipients and attempt to create brand loyalty and identity through marketing and by hosting exclusive events; Neera and I thus discovered that we were in the same family, albeit of different generations.

Neera’s implant and surgery had been purchased on the private market (and not through a government program) in 1999, when Neera was three years old, after her parents had taken her to specialists and spiritual healers around the country. Neera’s mother read about adult cochlear implantation in an Indian newspaper and contacted the reporter for more information. Subsequently, she reached out to surgeons and to Cochlear. Because their daughter was the first pediatric case in India, Neera’s parents were operating in uncharted waters. Neera’s mother’s family members asked her why she was so anxious to implant Neera and whether she was treating her daughter like “a guinea pig.” However, Neera’s mother insisted that she had to do everything possible for her child. The family purchased the implant—the processor and the internal components—directly from Cochlear, and a family member traveled to Bangalore to pick it up from the distributor there. Nowadays implants are sent directly to approved surgeons, or, in the case of government programs, they are shipped to a central distribution point and then sent out to hospitals. In addition, Cochlear and two other cochlear implant manufacturers have actual brick-and-mortar headquarters in India.

A brief interlude on what a cochlear implant is: Unlike a hearing aid, a cochlear implant bypasses many parts of the acoustic hearing system and electronically stimulates the auditory nerve in order to produce hearing. A cochlear implant has two main parts: a surgically implanted component (the internal part), in which the most significant element is the electrode array inserted in the cochlea, and an external processor. The battery-operated processor is typically worn behind the ear and has a cable with a magnet in it that communicates with a receiver. The receiver transmits sound information to the electrode array. Each electrode stimulates a specific frequency range in the cochlea, which then stimulates auditory nerve fibers associated with that frequency. Adjusting to implant hearing takes time and work. Two to three weeks after the electrode array is inserted, an audiologist activates the external processor using proprietary software. The audiologist then adjusts the settings for each electrode and creates a range of hearing between a threshold level (the least amount of electrical stimulation possible) and a comfort level (the loudest sounds that the person can tolerate). This is called “mapping” the implant. The goal of mapping is to optimize the implanted person’s access to sound by adjusting input to the specific electrodes. As the person becomes accustomed to the implant, the map needs to be adjusted, and typically the person will return to the audiologist frequently after the initial activation and mapping. Most people who receive implants can expect to have a stable map established by eight to eighteen months after activation.

As cochlear implants travel—from manufacturers’ international headquarters to their Indian locations and then to surgeons and hospitals, and on to the implant users themselves—so do people and forms of expertise. Becoming an implant user ties the user and the family to specific locations geographically, technologically, sensorially, and emotionally. Internationally, these locations include the headquarters of cochlear implant manufacturers in Australia, Austria, France, and the United States. They also include the schools and clinics where therapeutic methods originated in Australia, England, Canada, and the United States. In India, these locations are cities such as Mumbai, Delhi, Chennai, and Pune, although increasingly, cochlear implant surgeries are performed in smaller cities and towns, often as part of central and state government capacity-building efforts to develop cochlear implant infrastructure. Despite this expansion in surgical locations, however, it is often difficult for families of deaf children to find qualified audiologists, speech and language pathologists, and cochlear implant distributors outside of major Indian cities.

Neera’s family had initially planned to have her surgery done in Chennai by a well-known surgeon because they believed that he had the most experience. However, a Mumbai-based surgeon had recently completed the necessary number of adult implantations to qualify to take on pediatric cases, as per Cochlear’s rules. (The corporations that make cochlear implants have established rules about how many adult implant surgeries surgeons must perform before they are permitted to operate on children. They also require initial pediatric surgeries to be done under the guidance of mentor surgeons.) Since Mumbai was closer to Neera’s family’s home, they went to him—much to the disappointment of the surgeon in Chennai, who wanted the honor of doing the first pediatric surgery. Because Neera was the first pediatric case in India, a representative from Cochlear’s Australian headquarters traveled to Mumbai to monitor the surgery (Cochlear had a significant stake in Neera’s surgery, her implant’s subsequent activation, and her re/habilitation, given the corporation’s desire to grow its presence in India).2 Neera’s family then had to figure out how to get Neera the follow-up therapy she would need.

Since Neera had been lipreading for three years prior to her implantation, focusing on audition was difficult for her. A speech and language therapist suggested that in order to force Neera to use her auditory sense and listen, her family should stop speaking Marathi and instead speak English without allowing Neera to lipread.3 Neera’s two sets of grandparents thus learned a new language to communicate with her.4 Neera’s mother told me that Neera initially hated not being permitted to lipread and that she would often fight with her and demand to see her lips. Although Neera was the first pediatric implant recipient—the term used by cochlear implant corporations to refer to implant users—her family’s story of traveling long distances and adopting new communication practices is one that I heard echoed throughout my research.5

A year earlier, in July 2018, I met seven-year-old twins who had recently been implanted in Bangalore. I went to their family’s apartment, located down a small lane off the ring road of the city, and the twins showed me the huge cardboard box that their implants had come in, along with the cables, coils, and batteries required for the external processor to function. The twins had received processors made by the same corporation that made Neera’s and my implants. Previously called the Special Processor for India and China, the processor model they received is now more neutrally called the CP802. Also distributed through government programs, the CP802 is an entry-level “basic processor” without noise-reduction programming or directional microphones. It is manufactured by Cochlear, which means the twins were part of the same family as Neera and I. The twins’ surgeries and implants were paid for by family savings and funding from the hospital in which the surgery was performed. Theirs were the first cochlear implant surgeries performed at that hospital, and after successful completion, the hospital erected a giant billboard congratulating both itself and the surgeons involved. Meanwhile, when I met them, the twins had been sitting at home for six weeks; their external processors had been activated, but they had not been back to the audiologist for updated mapping. It was thus unclear how well the implants were working, since initially maps need to be adjusted frequently.

During my visit, the twins sat fiddling with their implants, wincing when the magnets attached to their processors touched their still-tender scalps, while their mother talked to them whenever she was able to pause in her significant housework routine. They had previously attended a school for deaf children where Indian Sign Language was (and still is) used. They had made great strides in learning ISL and were well liked by their teachers. One of the twins pulled out a school notebook, pointed to pictures in it, and used ISL to name the items depicted. We looked at black-and-white photographs of a hairbrush, a toothbrush, a mirror, and other household objects. He was eager to communicate, and these domestic pictures served as a scaffold. However, his mother, who had also learned ISL in her work as a substitute teacher at the deaf school, told me that she was no longer responding to the twins in ISL, only in spoken language. No one at the twins’ former school thought it was a good idea for them to be implanted. Their mother too made it clear that she had yielded to pressure from her family to have the twins implanted (she was separated from the children’s father and raising them on her own with help from her natal family). At the same time, she said that she and the twins had been subjected to mocking and disparaging comments at family functions and out in public, and she hoped that the implants would help to improve their experiences in such situations. She stressed that she was prepared “to do everything” to help her children succeed and that she was “going to work very hard,” an especially poignant statement in light of her substantial household duties. As the principal at a school for deaf children pointed out to me, mothers in particular are expected to become “like cricket commentators” and talk nonstop with their deaf children.

Hierarchies of Signals and Technologies

I thought about the cardboard box that contained the twins’ implants and supplies one frigid January morning in 2019 when I was out for a run in Chicago. This was one of my first runs after my second cochlear implant surgery and activation, my left ear this time, in December 2018. It was five months since I had last seen the twins. I was running, I was cold, and I was also angry. I was angry because I did not have any residual hearing left in my recently implanted left ear. I was no longer able to hear the low-pitched sounds of my child and husband stomping down the stairs in the morning. Previously, I used a hearing aid in my left ear and an implant in my right. I had utilized residual hearing, my hearing, that had been amplified by a hearing aid. This balance of implant and hearing aid, the mingling of different types of signals, made sense to me. I was indignant that during presurgery conversations, my surgeon had said that the hearing I had was so minimal, it was not really worth saving (residual hearing is often diminished or decimated entirely during cochlear implant surgery). Running along frozen Lake Michigan, I opted not to put my right processor on and was using only the left processor to train myself to hear from this newly implanted left ear. I ran by a colleague and stopped to chat. However, I could not follow the conversation and so quickly resumed my run. I had decided to get the second implant rather casually: my hearing aid broke and my health insurance would not cover a new one, but it would cover an implant, and I had met people who had “gone bilateral” and found it beneficial. My audiologist told me that I was a great candidate for a second implant. And more than a year later, I was “almost normal” during a sound booth test.

What is “success” with a cochlear implant, and what does it mean to have “normal” or “almost normal” hearing? Being able to hear, specifically to understand, speech on the phone is considered a prime indicator of success because there are no visual cues during phone calls. Another measure of success is being able to repeat words, then sentences, and then finally sentences accompanied by noise in a sound booth test. Take, for example, the commonly used AzBio Sentence Test, which evaluates speech recognition, first in silence and then in noise of either five or ten decibels.6 The test taker sits in a quiet, and often stuffy, sound booth and listens to the disembodied recorded voices of American-accented men and women speaking in a conversational tone, uttering sentences such as the following: I could hear another conversation through a cordless phone. You should be used to taking money from ladies. Hang the air freshener from the rearview mirror. You must live in a gingerbread house! The cat was born with six toes.7 These seemingly random and often ridiculous sentences are intended to test the listener’s ability to hear without the help of contextual clues. The task at hand is to concentrate and repeat back what is said. The audiologist, sitting outside the booth and sometimes visible through a little window, counts how many words are repeated correctly for each sentence. Success consists of hearing within the “speech banana” of one’s audiogram: this banana-shaped zone is the area of the audiogram where most speech phonemes are located, roughly between twenty and sixty decibels.8 This does not include other sounds, such as the higher-pitched sounds of birds chirping, leaves rustling, and water dripping or the lower-pitched sounds of a vacuum cleaner, lawn mower, or jackhammer. It also does not include the sound of a person stomping down the stairs. The speech banana is a narrow slice of sound, sense, and sociality.

What kind of sensorium is this? I pose this question both literally and figuratively. Many attempts have been made to mimic what hearing with a cochlear implant and hearing loss in general sounds like, but what do these attempts actually mean, considering that brains adapt and adjust? These efforts to reproduce the experience of hearing loss and cochlear implanted hearing remind me of critiques of disability simulations in which nondisabled people attempt to experience what it feels like to embody disability through practices such as blindfolding, plugging ears, and using wheelchairs.9 I am not interested in theorizing or describing what a cochlear implant sounds like or in drawing comparisons for a hearing audience. My least-favorite question as a deaf person, now an implanted deaf person, is “What do you hear?”

It is impossible to describe accurately or to theorize what the auditory experience of a cochlear implant user is, just as it is impossible to describe or theorize the embodied or sensory experience of impairment, or nonimpairment, more broadly, as Elizabeth Keating and R. Neill Hadder (2010) point out. Jonathan Sterne (2003, 13) argues: “If there is no ‘mere’ or innocent description of sound, then there is no ‘mere’ or innocent description of sonic experience.” How, then, does one get at this experience? By showing an audiogram with its lines, Xs, and Os? By waxing poetic with visual metaphors? By invoking sounds and trying to establish sonic commensurability? All of these possible explanatory endeavors foreground lack or deficit.10 In this book I do not attempt to describe or theorize the hearing experiences of cochlear implant users, particularly in relation to sensory normality and its absence. I am, however, concerned with lack of another sort: the lack that stems from deep inequalities in how people hear with and experience implants, and the world, as a result of different iterations of technology, planned and geographically stratified obsolescence, and a growing private cochlear implant market.

The big box the twins received from Cochlear was different from the backpack the company provided for me. Their box was made of cardboard, with soft disposable plastic bags holding the contents, instead of durable nylon packed with reusable hard-plastic cases. And the twins received the CP802, while Neera had the N5, and I got the N7. At the same point in time, we all received different iterations of cochlear implant technology, undoubtedly because of the differences in our access to resources. Obsolescence also varies according to geographic location. In the United States, for example, the CP802 was never used, the N5 is now obsolete, and the N7 is the latest technology. In India, all three processors are currently being distributed, along with the Kanso, a new processor made by Cochlear that sits directly on the magnet location, with nothing behind the ear—it can thus be rendered almost invisible (it looks like a thick coin with a magnet attached). The Kanso is one of the most expensive processors on the market and is supposed to have the most advanced noise-cancellation technology; Indian audiologists consider it to be a “status symbol.” What are the stakes involved when children like the twins in India are the recipients of cochlear implant technology that is considered obsolete in countries such as the United States and Australia? In this book I discuss hierarchies of sensation writ large and the ways that children and others who are implanted become subjected to these, as well as to hierarchies of technology development. There are also hierarchies of class, caste, gender, geographic location, and religion that play into how a child’s potential is seen and activated.

Deaf (Dis)similitude and the Boundaries of Deaf Anthropology

In my book Valuing Deaf Worlds in Urban India (2015), I wrote about my first encounter with a deaf woman on a crowded bus, a woman who later became a friend. We signed “DEAF SAME” to each other across the bus, establishing that we were both deaf and therefore “the same.” We never shared our audiograms or talked about the hearing aids or other hearing technologies we used. Rather, we focused on the fact that we were deaf signers with a shared interest in and commitment to promoting what my interlocutors called “deaf development,” or more deaf-focused and sign language–based ways of being in and creating worlds. In that book, I analyzed how deaf people engaged in “sameness work” in which they actively minimized and circumvented differences—in age, class, educational background, and gender, for example—in order to foreground a unified sense of deaf sociality. It did not matter that some people were learning ISL as teenagers or young adults and that some people were fluent ISL speakers. What mattered was that people had the desire to learn ISL and that they endeavored to become a specific kind of deaf person invested in shared visions of deaf futures.

In contrast to that earlier work, here I explore the kinds of socialities that can exist around shared (desires for) normality. I attend to biosocial connections (Rabinow 2005), such as that between Neera and me, while also being mindful of biosocial refusals: a mother who wants her daughter to speak better than another deaf child; an early intervention program where deaf children become close friends, only to graduate and be told that they should interact only with “normal” children; an audiologist’s insistence that no two deaf children ever have identical audiograms. Recall that Neera’s mother asked me questions about my audiological and educational history. She asked for information about my age of diagnosis, when I first started talking, when I got my hearing aids and then my implants, and if I went to a normal school. She asked me for dates, numbers, and medical categories. (She may have enjoyed reading my audiology case file, if I had offered it to her.)

Later I learned that Neera and I had similar experiences in school relating to dismissive teachers and cruel classmates. However, Neera and her mother minimized these ambivalent or negative experiences. They instead focused on how well Neera did overall in school, how she did not use any accommodations in school, and how she was “like normal.” As we ate dinner, however, Neera’s mother talked about how she wished that Neera would continue speech therapy because she felt that her speech could be better, that she could become “more normal.” And she turned to me and asked: “You are meeting so many implanted children around India, how does my daughter compare to them? How is her speech?” I politely declined to answer the question. But how to compare? I felt a sense of connection with Neera, and we listened carefully to each other, making sure that we could see and understand each other. These practices were outside the discussion of audiograms and speech clarity and gestured to a shared social and sensory experience in the world, even if we did not have the same sensory experience. (I also felt a sense of connection with Neera’s mother, who did not seem all that different from my own mother.)

Much of the deaf studies and deaf anthropology literature has analyzed what is distinctive about deaf communities, socialities, worlds, spaces, and networks (Friedner and Kusters 2020). Some scholars have devoted their efforts to analyzing how deaf people orient toward each other—across difference—to create a sense of community predicated on sameness. In 1975, James Woodward made a distinction between deaf and Deaf, arguing that the former is a medicalized term while the latter marks someone as a member of a linguistic group. In 1980, Paul Higgins argued that membership in deaf communities is not ascribed but must be achieved through identification with other deaf people and participation in deaf community events (5–6). Whereas Higgins foregrounded that deaf people are “outsiders in a hearing world” who become members of a “deaf community,” Carol Padden, also in 1980, introduced the concept of “deaf culture” to highlight that deaf people have their own social and cultural practices.11 A focus on deaf communities and cultures—and other forms of deaf similitude—is an analytical and empirical move aimed at attending to, supporting, and perhaps bringing into being certain world-making projects, what Faye Ginsburg and Rayna Rapp (2013) call “disability worlds.” However, what happens when there is a focus on “normal worlds,” or desires to become normal, in these “disability worlds”?

Departing from the earlier deaf studies literature discussed above, I write about deafness without focusing on community. I avoid the concept of community in order to foreground differential sensory, social, and personal outcomes and the ambivalence, often rooted in a sense of comparative unease, that exists for implanted people and their families when they encounter each other. While individuals might share the same diagnostic categories, such as “severe to profound sensorineural deafness,” there is often variation in terms of age of onset, technology used, early intervention methods and duration, and family desires and dynamics. Families considering cochlear implantation for a deaf child are told that they should meet other families, usually handpicked “star cases,” so that they can see the difference between their child and the star cases. Audiologists and speech and language pathologists engineer meetings between parents in their waiting rooms. In particular, they want parents whose children are not progressing or parents judged as not working hard enough to see more successful children. But the waiting room is a (literal) site of tension, because not every child can become the same as the next. Despite the omnipresent and proliferating discourses about potentiality and the possibility of becoming normal, there is also the specter of so-called failure and the need for managed and modest expectations. This is why I was often uncomfortable as I was conducting my research—I was frequently held up as a model of what a “successful” cochlear implant user could become in terms of listening and spoken language. That “compliment” that deaf people have always found so disconcerting: “You speak so well!” How to reconcile feelings of discomfort with the fact that a mother or family who has worked hard to achieve that outcome might feel proud?

Disability and Deaf Rights Activism in India: Models in Flux

India has a vibrant and growing disability movement that comprises multiple groups such as nongovernmental organizations run by disabled people, parents’ organizations, direct service providers, and internationally funded charities. These organizations encompass many different perspectives, from a focus on basic needs and health to advocacy concerning employment in multinational corporations and access to air travel. In 2016, catalyzed by protests and activism that took place after the United Nations Convention on the Rights of Persons with Disabilities was ratified, India passed the Rights of Persons with Disabilities Act, a revision and update of its first disability law, the 1995 Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act. Today, disability rights activists routinely call on the state to increase accessibility in all aspects of life, from employment to education to recreation, and demands for disability rights are ubiquitous.12

The frame of disability rights encompasses a wide range of issues, including advocacy for inclusive educational opportunities, sign language interpreting on television news programs and at political events, nondiscrimination in employment, and the removal of architectural barriers in public and private spaces. In contrast to a focus on rights, the Indian state has traditionally engaged with disability as a category through the distribution of aids, appliances, pensions, and reduced-fare transit cards, as well as the establishment of reservations (quotas) in government employment and education; these efforts are aimed at maximizing independence and productivity while also showcasing the state’s ability to provide for disabled people.

This focus on distribution, often glossed as welfare, is dismissed by urban-based disability rights activists and advocates as “charity,” although rural disabled people stress that these entitlements are important and valuable for building and sustaining lives (Palaniappan 2019). India’s central government cochlear implant program is the first initiative to include surgery under the Ministry of Social Justice and Empowerment’s purview. The program is part of the Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances (ADIP) scheme. It is well publicized and often featured in the news media, as I discuss in chapter 1. Diverse actors see cochlear implants as manifesting different models of and approaches to disability and thus different relationships, responsibilities, and obligations.

Officials, activists, and researchers have strong perspectives on what constitutes a “charitable model approach,” a “medical model approach,” a “welfare model approach,” a “social model approach,” and a “rights-based approach” to disability. In practice, however, these models, approaches, and categories intersect and overlap (Staples 2018, 130). What kind of model and approach do people consider cochlear implantation to be? Is implantation an example of the medical model, in that it is an intervention that focuses on fixing an individual? The social model, in that it empowers individuals to participate in mainstream life? The charitable model, in that implants are seemingly gifted by the state? The rights-based model, in that implants enable individuals to exercise their right to maximize their health and well-being? (These are all arguments that I heard in the course of my research.) Implanting a sense poses empirical and conceptual questions around how the state approaches disability in general.

While Indian health researchers, government administrators, and some disability rights organizations see cochlear implants as a right, disability rights organizations have largely focused on advocating for the development and institutionalization of Indian Sign Language. The Delhi-based Disability Rights Group supported the Indian National Association of the Deaf (not to be confused with the U.S.-based National Association of the Deaf) in its fight to establish a government-funded research and training center for ISL. As a result of lobbying by the Indian NAD, ISL interpreters have been engaged to interpret political speeches as well as spoken presentations at other events. There was also a (failed) campaign to gain recognition of ISL as an official language in 2018–19. While the Indian NAD initially was opposed to cochlear implants, as it explained in a position statement taken verbatim from a 1991 statement of the U.S.-based NAD, neither the Indian nor the U.S. NAD currently has an official position on cochlear implants.13

Although the Indian NAD has not adopted a public position against government-funded cochlear implant programs, many members of the organization, and deaf activists in general, decry cochlear implants, and there is lively traffic on social media describing medical complications associated with implantation and personality changes that can occur after someone is implanted. For example, one night in July 2018, deaf activists told me horror stories: a young man who could no longer smile because his facial nerve had been cut during implant surgery; a family who sold their land to implant a deaf son, and then the surgery was not successful; a young woman with chronic severe headaches as the result of implantation; and so on. These stories were in jarring contrast to the overwhelmingly positive coverage in the mainstream news media. Many of the horror stories were about adults and not children, an important fact, in that children are the dominant target of cochlear implantation and are seen to possess the most potential to become hearing and speaking. For deaf signers, deaf children are particularly important in that there is potential for them to become signers. Intergenerational transmission of language, values, and culture is an important concept and value within deaf communities. What kinds of intergenerational socialities (are imagined to) exist, and how often do deaf adults and deaf children actually interact in everyday life?14 As children are implanted, mainstreamed, and discouraged from using gesture and sign language, their opportunities to interact with ISL speakers and other deaf people in general contract.

Children play an ambiguous role within disability rights movements in India and internationally, in that their voices are often mediated by parents, caretakers, or older disabled people and are not explicitly foregrounded.15 Questions loom large about who decides for children and who can speak with authority for and to them. As scholars have noted, there is often tension between disability activists and the parents of disabled children about what is best for those children (and some parents of disabled children are also disabled and/or disability activists themselves).16 What is often at stake are different teleologies: both parties have visions of what the ideal future might look like for disabled children and what these children should and should not become. Often, for families, the ideal future is one in which their children will become “just like everyone else” and they will “listen and speak as normal children do”; this future is predicated on sensory normality, or on getting as close to it as possible. In contrast, disabled and deaf activists’ goal is for disabled and deaf people to reject normality and realize their disability or deaf identity, so that they can become part of disability or deaf communities.17 I move away from sensory, communicative, social, and political teleologies in this book and do not say much about India’s disability movements (except in chapters 1 and 4) because cochlear implants have largely not been “matters of concern” for such movements (Latour 2004). I do not attend to disability as an identity category and subject position from which to demand rights, although, as I note, the people I spoke with in my research often wondered what cochlear implants do to identities and abilities, especially in relation to asking for entitlements from the state.

To return to the examples of Neera and the twins (and see the Appendix for more cases), I argue that it is important to attend to their diverse sensory attunements and experiences. More than this, I want their futures to be (sensorially, communicatively, socially, and politically) open and not predestined.18 In work on queer relationality, José Esteban Muñoz (2006, 677) foregrounds the role of “the receptors we use to hear each other and the frequencies on which certain subalterns speak and are heard or, more importantly, felt”; he pushes us beyond identity to the work of sensing in creating relationality. I examine how “receptors,” in Muñoz’s words, are socially and politically produced and, as a result, only certain “frequencies” are valued. How are touch, taste, vision, and other nonauditory senses fugitive forms of knowing, giving and receiving pleasure, and engaging that operate below the radar and beyond normative forms of recognition?19 “Receptors” are produced through infrastructures. I attend to the multisensory, multimodal, and multipersonal processes by which specific kinds of signals are rendered valuable and transduced into meaningful forms of social connection as well as the sensory infrastructures that allow these transductions to happen.

Sensory Infrastructures

The Indian Sign Language Research and Training Centre opened its doors in 2015, and a handful of early intervention and educational programs around the country use ISL as a language of instruction. The revised 2016 Rights of Persons with Disabilities Act explicitly mentions sign language, an improvement on the 1995 act, which did not. However, at the same time that recognition and awareness of ISL is increasing, along with a limited infrastructure for training and employing ISL interpreters (there are currently very few ISL interpreters across India), a cochlear implant infrastructure is also growing rapidly. In 2012, Andhra Pradesh became the first state to offer a cochlear implant program, followed by Kerala, and in 2014, under Prime Minister Narendra Modi, cochlear implants were included in the ADIP scheme. Other states have since followed suit. Through the scheme, the Indian government is building sensory infrastructures that aim to produce normatively listening and speaking subjects.

I deliberately foreground the concept of infrastructure because the government administrators, public health officials, surgeons, audiologists, and speech and language pathologists I interviewed in my research talked about infrastructure constantly: the need for more infrastructure in the domains of newborn hearing screening, early intervention, surgical facilities, and listening and spoken language training. To them, infrastructure meant testing equipment, soundproof testing rooms, surgical operating rooms and necessary surgical equipment, auditory verbal therapy courses, auditory therapy centers with noise-canceling architectural features, transparent online platforms for registering for the central government cochlear implant program, and cochlear implant distribution and repair centers. This infrastructure is made up of visible, material, and often technical structures and institutions. Government officials saw the emergence and expansion of the central government cochlear implant program as an infrastructural project, designed to build and expand surgery and re/habilitation capacity and skill around the country. Indeed, infrastructure is mobilized as a means of asserting present or future modernity and benevolence.20

In this book, I explore the infrastructure associated with cochlear implants mentioned above, but I do not see infrastructure as solely material and technological. I think beyond the binary of visible and invisible infrastructure (Larkin 2013, 336) to consider auditory, tactile, and other sensory infrastructural forms. I also consider social and pedagogical infrastructures. I think of Lev Vygotsky’s (1978) work on the zone of proximal development and the ways that therapists and families scaffold children’s development by providing linguistic and social infrastructures through which children can communicate and engage with others; these infrastructures fix ideas of potential and provide children with paths toward becoming appropriately listening and speaking subjects.21 Scaffolding imprints into and onto the senses through transitory and permanent forms of social and material infrastructures; it permanently molds senses, modes, and relations. Scaffolds create conditions for growth in specific directions, and capability and growth are normatively and prescriptively defined. Adults create conditions for children to learn by providing controlled and constrained communicative structures (Wood, Bruner, and Ross 1976, 90).22 Vygotsky (1978, 86) notes: “The zone of proximal development defines those functions that have not yet matured but are in the process of maturation, functions that will mature tomorrow but are currently in an embryonic state. These functions could be termed the ‘buds’ or ‘flowers’ of development rather than the ‘fruits’ of development.” In clinics, classrooms, and everyday life, parents work to maximize their children’s potential development, specifically in relation to age-appropriate listening and spoken language skills. Parents are taught to structure communicative interactions as interpersonal infrastructure.

I attend to what I call sensory infrastructures, which include the technical infrastructures discussed above as well as authoritative, pedagogical, caring, and social relationships that occur around cochlear implantation, re/habilitation, and maintenance. Infrastructure works on and is worked on by the senses. Christina Schwenkel (2015) notes that “infrastructure, broken or not, often evokes a multiplicity of embodied sensations across the human sensorium.” Catherine Fennell (2015, 32, 130) argues that infrastructures “press into flesh” and that, as a result of ongoing impingement, bodies are not “infinitely malleable.” Writing about Chicagoans living in public housing, Fennell analyzes how the conditions of such housing—temperature settings, smells, and the kinds of sociality enabled—result in certain bodily dispositions. How might we think about the ways that infrastructures produce, enable, and constrain the development of senses and the possibility of sensory experience? I go further than Schwenkel’s seemingly already intact sensorium and Fennell’s bodily dispositions to consider how infrastructure creates possibilities for the making of a sensorium.

Consider these three diverse spaces: a soundproofed early intervention classroom in which four deaf children with hearing aids and implants sit at a small table close together with their teacher while their mothers sit outside chatting; an air-conditioned therapy classroom, brightly lit and full of enticing toys, where a child sits between her mother and her therapist; and another early intervention classroom that is noisy because of a whirling fan, open windows, and concrete floors, in which many mothers and children sit together talking on mats in dyads, raising their voices to be heard above the others who are also talking. How are these spaces different sensory infrastructures? In the first and second settings, children are not allowed to look at their teachers or mothers to lipread and must use only audition. In the third classroom, mothers use visual and tactile cues in order to talk with and teach their children (and it might be too noisy to hear). Consider the infrastructures of urban primary school classrooms in India, where windows are open to honking traffic and fans click and whir as children sit on wooden benches, surrounded by fifty other children, while a teacher lectures or dictates. There are also classrooms in deaf schools in which there are fifty children, the majority without hearing technology, and a teacher who does not sign. What kinds of pedagogical, social, and sensory infrastructures develop in such spaces, and how do they create conditions for specific kinds of communication and relationality? Again, let us think about Vygotsky’s “embryonic state,” “buds,” and “flowers”—what kinds of teleological becoming are enabled?

Multisensory and Multimodal Unruliness

I am inspired by Rebecca Sanchez’s (2020, 272) statement that “deaf people’s experience of sound is multisensory, multimodal, prosthetic, and interdependent.” Deaf studies scholars and scholars of multimodality and translanguaging have recently called attention to deaf people’s diverse semiotic repertoires and the ways that deaf people might, at any given moment, use a combination of resources to communicate: for example, they might mouth, speak, sign, gesture, and/or write. Scholars have stressed that deaf people are exceptionally skilled at communicating across linguistic difference because they have learned to work with multiple resources.23 Similarly, disability scholars and activists who focus on autistic communication have called attention to multimodal communicative practices among autistic people, including typing, writing, facilitated communication involving the help of another person, gesturing, flapping, and stimming (Bascom 2012; Sequenzia and Grace 2015).24 Indeed, Alastair Pennycook (2017a, 455) stresses that “language is part of a much broader set of semiotic possibilities.” I think about communication beyond “language” and consider all the resources that people bring to the table in order to make meaning happen.

What is recognized as communication? How do we embrace communicative and sensory unruliness while also attending to hierarchies, power imbalances, and the different values placed on some modes of sensing and communicating? I discuss the ways that the senses are worked on according to different ideas of what an ideally sensing person is, or, specifically, an ideally sensing deaf person. At stake is the role of the senses, and the privileging of particular senses, in ideologies of “sense making” and the ways that certain senses are (not) permitted to (literally) make sense (Moriarty Harrelson 2017). As a result of cochlear implantation, therapeutic techniques have focused on one mode, listening and spoken language, and communication options have been segmented and placed along a continuum. Different communication options are categorized as listening and spoken language, sign language, cued speech, and/or total communication. These categories function as ideologically constructed ideal types. I stress that becoming multimodal is a fraught achievement, in that the senses, while always in relation, are often seen as in competition.25

I hold on to sensory difference—beyond and apart from the difference that culture and context make.26 I analyze the kinds of social, political, and moral personhood that emerge when children are taught to orient toward sound and to become social through listening and speaking. I discuss developmental paths that are pluripotent and fraught with friction. Practitioners of auditory verbal therapy often stress that “deaf children must be forced to listen.” This use of the word force points to the difficult labor of the child who must concentrate intently on listening as an AVT specialist repeats words and sentences again and again while covering her mouth or standing behind the child to prevent lipreading. (People I interviewed who attended AVT sessions as children constantly stressed the hard work required, although today AVT specialists often try to create more playful environments that might obscure the difficult work of listening.) In the case of deaf children learning to sign, there is a different source of friction: the fear attached to going off a path, trying to find sign language–based resources, confronting stigma, and generally going against societal expectations and sensory ideals.

One sultry night in summer 2016, I hung out with a group of deaf and hearing friends at the Indian Coffee House in New Delhi. A deaf woman, known for her assertive personality, turned to me and said, “You are half hearing, half deaf, half speaking, half signing; half half half half.” I believe she said this with a bit of exasperation: she was unsure how to categorize me, and my halting ISL may have frustrated her. I do not think she meant what she said as a compliment; rather, it was her way of stating that I was not completely entrenched in one linguistic or social world (which is true for many deaf and hearing people); I was not whole, in her analysis of me. (Another interpretation is that I was more than whole at 200 percent!) In response to this provocative statement, I think about the ways that (some) disabled and deaf people experience their sensorium as complete, and I reject a focus on deficit or loss. In my case, all of those “halves” produce a sense of balance. People intersense (Howes 2006) and maximize their sensory potential in ways that might not be expected or desired, but they are never incomplete.27 (I also recognize that there are other ways of being besides the binaries of half and whole, loss and gain, incomplete and complete.)

Dividing the senses into discrete categories is both an act of care and a form of violence, a way of both creating and inhibiting the wholeness of people’s lifeworlds. I think about teachers in oral or aural schools pushing down the hands of deaf children when they gesture or sign as well as sign language teachers who prevent deaf children from mouthing. This is a relevant tangent: I also think about DeafBlind children in the United States and elsewhere who are prohibited from touching each other and who have been kept away from the importance of touch as a sense. I engage broadly with all of the senses that deaf people bring to bear on their experiences, and I argue for the importance of multisensory and multimodal engagement, or, following Margaret Mead, “total communication.” Mead ([1964] 1972, 279) argues that the study of semiotics needs to be interdisciplinary and expansive; her push to study “total communication” in a total manner predates research on multimodal and multisensory communication approaches that have now come into vogue in attempts to analyze communication—including the nonlinguistic—and to attribute competence to communicative practices that were previously not valued or assumed to be deficient. Indeed, Michael Herzfeld (2001, 242) calls for an anthropology that is “necessarily shot through with alertness to the entire gamut of sensory semiosis.” I respond to that call.

Conducting Multisensory, Multimodal, and Multipersonal Research

I conducted much of the research for my first book in Indian Sign Language and with signing deaf people. In 2010, my right ear was implanted, much to the disdain and chagrin of friends in Bangalore (many grimaced when I showed them my implant after returning to the city to catch up). In contrast, for this book, I foregrounded the perspectives of nonsigning deaf people and their families, audiologists, speech and language pathologists, surgeons, and government administrators.28 I spent time in surgeons’ offices, hospitals, audiology and speech therapy clinics, and with the families of deaf people in their homes, in schools, and in early intervention programs. I endeavored to engage with these often power-laden perspectives through modes that were not solely critical, because motivations, sentiments, and actions can be complex, multilayered, and ambivalent. To simply demonize or dismiss such perspectives would be to risk ignoring key stakeholders in deaf life.

While I still see my ISL-speaking friends, almost all of the research for this book was conducted in spoken language, another form of loss for me. Most interviews with professionals were in English, although I also interacted with families and observed consultations and therapy sessions that took place in Hindi, Marathi, and Tamil. These interactions were sometimes translated on the spot by someone present, but I also recorded them with consent in order to have them translated afterward. In therapy clinics, I sometimes watched sessions through a hidden window or on a video system, after receiving consent from the families, in order to avoid distracting easily distractable children. I was well aware that families traveled long distances for their audiology and speech and language therapy sessions, and that the stakes could be high for a short session. Sometimes I was invited to participate, and I clapped, sang, and talked during sessions. Audiologists and speech and language pathologists warmly welcomed me to their clinics and answered my questions patiently, sometimes taking the time to translate for me, and they and the families present often asked me questions as well. In surgeons’ offices, I struck up conversations with people waiting for their appointments and engaged in waiting room sociality.

There were also moments when my previous and current field sites came together. For example, I hired an Indian Sign Language interpreter to interpret for me from Hindi to ISL at a parents’ meeting held by a nongovernmental organization providing early intervention services and early childhood education. I asked the NGO’s director for permission to bring the interpreter to the meeting, because he was adamantly against the use of ISL by the children with whom his organization worked. He was fine with the interpreter’s presence, but he emphasized that the interpreter was there only for me. I also met speech and language therapists who used ISL with children, but “secretly”—they did not publicize this part of their practice.

There were also times when my implants gave me access, particularly to the Cochlear headquarters in Mumbai. I felt entitled to this access, since I have Cochlear’s implants, and I insisted on having a photograph taken there with a life-size cutout of Brett Lee, the Australian cricket star who is Cochlear’s “hearing ambassador.” As mentioned above, families and therapists were eager to talk to me about my experiences with my implants and ask me questions about my trajectory. I often wondered if I would have been able to do this research if I did not listen and speak and if I did not have cochlear implants myself.

With Stephanie Lloyd, I conducted participant observation at the Alexander Graham Bell Association’s 2018 annual symposium; we interviewed people together, attended the same and different panels, and constantly shared notes and perspectives. During the summer of 2018, I worked in Bangalore with a colleague named Sravanthi Dasari. Sravanthi and I were often together in noisy classrooms, where she could hear things that I could not. These moments of negotiated access revealed how anthropological work can be distributed, depending on the affordances of a site. In the summer of 2019, Deepa Palaniappan and I traveled together to Chennai, where she interpreted between Tamil and English. During one interaction I discovered that Deepa had told the mothers with whom we were talking that I was deaf and had cochlear implants: she turned to me and demanded that I show the mothers my implants. I was initially annoyed during such moments because I wanted to be the one to disclose, not her. But I came to realize that disclosure could be distributed too. As with Neera, I learned a great deal about children’s and adults’ cochlear implant experiences from other people, including the implantees’ parents, spouses, surgeons, teachers, and therapists. Cochlear implants, or more specifically talk about them, necessitated different kinds of disclosures as well as proclamations about intimacy, care, responsibility, and connection.

In 2018–21, Rajani Vaidya provided translations to and from English, Marathi, and Hindi in person and on recordings; she also conducted phone interviews. We often discussed the words and concepts used by interlocutors. In 2019, I traveled to Mumbai with Anjali Murthy, a former undergraduate student at the University of Chicago, for the Cochlear Implant Group of India’s annual conference. There was no real-time captioning or interpreting at this conference, and I was the only deaf person present. Anjali scribbled or typed notes to me during presentations when I did not hear things, and we had long conversations in which we went over the presentations that we had seen together. I foreground the important role that all these women played in this research both to emphasize the multipersonal nature of anthropological work and to demonstrate that there is a becoming that takes place in the merging of different sensory perspectives.29

Ambivalent Objects and Modes

In addition to focusing on interdependence among people, disability studies scholars and lay disabled people have highlighted the role that assistive technologies—white canes, wheelchairs, and prosthetics, among others—have played in constituting, extending, and complexifying a sense of self; for many scholars it is difficult to see where the self ends and assistive technology begins (see Bateson [1972] 2000).30 Such an approach looks at assistive technology as extending the self and contributing to what Benjamin Bahan (2014) calls “sensory reach.” Cochlear implants differ from other assistive objects in that they are surgically implanted, they are bionic, and the empirical and discursive boundary between person and device is blurred: the implant is supposed to activate the brain’s potential to become a hearing brain and the child’s potential to become a hearing child. In popular media and scientific research, claims are made for how implants produce specific kinds of “normally” sensing and acting subjects. According to this line of thinking, it is not simply that implants provide disabled people with different possibilities for moving through and engaging the world; rather, implants result in new sensory subjectivity. This resurfaces questions around whether cochlear implants are tools, aids, or something else entirely. Cochlear implants provoke difficult questions about the boundaries between ability and disability, passing and becoming, and deaf and hearing. They also ask us to consider what noise is, as well as what the intended goal of hearing is.

I do not take a position for or against cochlear implants; rather, I look at how they have become “domesticated” (Oudshoorn and Pinch 2003) and how they create new imperatives for producing normative forms of sensory personhood as well as social, political, and economic ties. Cochlear implants are more than just tools or aids and have the potential to both transform the domestic and render domestication unruly. I ask: What is a cochlear implant good for? What kinds of sensory personhood does it produce? What kinds of sensory infrastructures exist in the realm of hearing and deafness? And what kinds of sensory becoming and sensory worlds are at stake? I ask these questions in contrast to Deaf studies scholars, who have mostly written about cochlear implants in a negative register. For example, Paddy Ladd (2007, 3–4) writes that cochlear implantation is an example of “neocolonialism”; motivated by economic profit, it imposes scientific technology on and in deaf people. Similarly, Harlan Lane (2007, 59) argues that cochlear implants are a means of controlling, medicalizing, and disabling deaf people, and that their use will lead to the “eliminat[ion] of Deaf culture, language, and people.”31 However, deaf communities’ responses to cochlear implants have become more muted over time, perhaps as a result of the technology’s ubiquity. Or perhaps deaf communities have simply become more ambivalent about implants.

I write about becoming normal—and about cochlear implants more broadly—with a sense of ambivalence as well. Neil Smelser (1998, 8) observes that “dependent situations breed ambivalence.” Shortly after I got my first implant, someone asked me, “Do you not feel bad now, hearing all the things that you missed out on earlier?” I responded by trying to explain that no, rather than becoming aware of earlier loss, I actually felt like I had lost something postimplant. This loss exists at the same time as gain, as while I can now hear in the dark and do not need to lipread much when it is quiet, I am dependent on a multinational implant manufacturer, and an insurance company, for the maintenance of a sensory capacity. Ambivalence—as a mode and as a methodology—offers a way to traverse the space between loss and gain, ability and disability, independence and dependence, object and sense, and different values and interests. Ambivalence moves us beyond binaries, points to the limits of categories and classifications (Bauman 1991), and provides a way to move around the impasse created by moral imperatives (Kierans and Bell 2017). Indeed, as Kierans and Bell (2017, 37) write: “Ambivalence means that we have to accept that things are not readily clear, that we need to learn about the conditions under which something may get called an abomination or not, and about how people come to take up variable positions.” Ambivalence also acts as an important response to technological imperatives and what Sharon Kaufman (2015, 131) calls the “changing means and ends of technology.”32

Ambivalence offers a rejoinder to what Lauren Berlant (2011) calls “cruel optimism,” the state of desiring something that is actually an obstacle to one’s flourishing. I do not claim that cochlear implants are obstacles to flourishing; such a statement would ignore the many things I have heard about cochlear implants being life changing, as well as the fact that I myself have experienced them as life changing. As an implant user, I would find it problematic to argue against implantation. My own ambivalent experience, however, is one reason I would never tell families that they should not implant their children, although I would ask them to think expansively about “benefits” and “outcomes,” as there is always a question of what might be lost in addition to what is gained.33

As I discuss throughout this book, the complex dependencies associated with cochlear implantation interpellate all stakeholders, including the state, multinational corporations, surgeons, and deaf children and their families: these dependencies point to the unfinished, anxious, and pluripotent aspects of becoming normal. If only these actors would or could express some ambivalence as well. I argue that it is important to consider how we live in ambivalent relationship to different paths and modes of becoming in the world—becoming normal is no exception. Because of desires for and pursuits of sensory normality, actors such as the state, therapists, and deaf people themselves, as well as their families, are becoming other than they have been. What, however, is lost, minimized, or constrained through such becoming? I hold on to ambivalence.