Maintenance Problems

In 2013, I read articles in the newspaper The Hindu about a five-year-old deaf orphan named Ashreya in Madurai, Tamil Nadu, whose case had been taken up by a Chennai-based grassroots disability rights organization. When she was around three years old, Ashreya had been found abandoned at a pilgrimage site outside Madurai and taken to an orphanage. A couple of years went by, and then a wealthy philanthropist associated with the orphanage arranged for a local otolaryngologist to examine Ashreya. This doctor referred her to a hospital in Chennai for cochlear implant surgery under the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme. However, because Ashreya was an orphan, she did not have a birth certificate or a ration card, and the hospital was unwilling to accept her disability certificate or age proof as certified by a hospital board. The philanthropist sought help from the Office of the Chief Commissioner for Persons with Disabilities in Delhi as well as from the Chennai-based disability activist organization. It was a race against time, because Ashreya was ostensibly five and a half years old by then, and the cutoff age for cochlear implants under the Tamil Nadu state program was six years. While reading about the case, I was intrigued that a rights-based disability organization had advocated for an individual child to get an expensive surgery and device, and I was also surprised that such an organization would embrace cochlear implants, because most Indian deaf organizations were against them. I never followed up on my curiosity, however.

In the summer of 2019, I found myself in Chennai in the office of the disability organization that had advocated for Ashreya. I eagerly asked for an update and inquired about Ashreya. Landon, the organization’s director, was tickled that I remembered the case from six years ago. He was happy to tell me that because of his organization’s intervention, Ashreya had gotten a cochlear implant. She now lived in Chennai with the family that had taken her in when she needed to be in Chennai regularly for postoperative therapy. Serendipitously, the father of the family, Deepak, was the director of a disability trust with whom Landon shared an office, and he called Deepak over to meet me.1 As we sipped coffee and waited for Deepak, I asked Landon what his organization was doing about cochlear implant maintenance problems, since this was a major issue that I had been hearing a lot about from families, audiologists, and speech and language pathologists. He looked at me in surprise and asked what I was talking about, exclaiming that implants are a one-time expense. I gazed back at him, also quite surprised, because I had found talk about maintenance to be ubiquitous.

At that moment, Deepak walked in. He told me that Ashreya was now twelve years old and in seventh standard, where she was an “average student.” She was very close to his two biological children and also to his wife, a special educator who helped Ashreya with her schoolwork and worked with Ashreya’s teacher to modify the school curriculum as needed. The family had taken an Indian Sign Language class together because signing helped them with communication. I asked Deepak about Ashreya’s implant, since her surgery had taken place more than six years ago. He exclaimed that the cochlear implant “is so difficult to maintain!” and began reciting an itemized list of the money spent: Rs 7,000 (US$93) for a battery, Rs 2,500 (US$33) for a cord, and additional funds for the battery charger and the drying balls for the dry kit. (The external processor is supposed to be placed in a drying machine every night, and maintaining this machine involves consistent replacement of small balls containing moisture-absorbing silica crystals.) In a critique of how expensive these patented parts are, Deepak observed that the “coil does not really do anything and has no electronic parts,” so it could or should be “some fifty-rupee [US$0.67] China-made part but it is not, it is two thousand five hundred rupees.” He did not receive any replacements directly from the government, although sometimes a government hospital unofficially gave him a used rechargeable battery.

Deepak was distressed that implant maintenance costs are so prohibitive, but he was invested in continuing maintenance routines. He had no choice. Ashreya, her teachers, and the rest of the family became upset when the implant stopped working, and they pressured him to have it repaired quickly.2 As he told me all this, I looked over at Landon, who said that he previously had no idea about these “maintenance issues.” He asked Deepak why he had not shared any of this before. Deepak replied that maintenance was personal and not a political issue. In saying this, he exhibited a logic that resonated with that of the state: there is the initial implantation, the “one-time expense,” and everything after that is the personal responsibility of the beneficiary. Deepak’s statement that maintenance is a personal issue brings up questions about the kinds of domestic worlds that maintenance creates. How do these worlds intersect with the state, medical institutions, audiology and speech and language therapy centers, multinational cochlear implant manufacturers, and nongovernmental and charitable organizations as families seek funds to help with maintenance costs? Care for one’s child means caring for the device (or the “machine,” as it is called), and caring for the device means caring for the child.

In this chapter, I explore the “maintenance problems” that I heard about frequently during my research. I analyze comments such as these: “Madam, there are maintenance problems,” “I am worried about how I will maintain the device because it is so costly,” and “Poor people will not be able to maintain the device.” I also examine statements such as this one: “It is important that we ask families to contribute and pay for accessories as otherwise they will not value the implant.” In a discussion about the importance of maintenance and repair as analytic and experiential categories, Stephen Graham and Nigel Thrift (2007, 4) write: “It becomes increasingly difficult to define what the ‘thing’ is that is being maintained and repaired. Is it the thing itself, or the negotiated order that surrounds it, or some ‘larger’ entity?” As Graham and Thrift stress, concerns about maintenance are not just concerns about particular devices, here cochlear implants; rather, they index larger issues within a structuring order that are political as much as they are personal, in contrast to Deepak’s view of maintenance as personal.

The phrase “maintenance problems” indexes a plethora of issues, from maintaining devices and finding funds for such devices to maintaining relationships with corporations and different kinds of professionals, and from maintaining a child’s status as a hearing and speaking child to maintaining visions of a future in which the child continues to be a listening and speaking person. Mothers and teachers often talked to me about “behavior problems” and how children become despondent, agitated, and unruly when their implants stop working. “Maintenance problems” thus result in “behavior problems” through the rupturing of routines and the foreclosing of (hard-earned) channels of communication and sociality. Children who are “successful cochlear implant cases” are especially vulnerable: for them the impact of a broken or missing device is significant, because they have become dependent on the device and oriented toward being listening and speaking persons. Such children experience the loss of the cochlear implant as a loss of capacity.

Arguing that scholars and laypersons alike are overly attentive to innovation and ignore maintenance, Andrew Russell and Lee Vinsel (2018, 7) define maintenance as “all of the work that goes into preserving technical and physical orders.” Note that while they do not include social or emotional work, or care, under this definition, I do. Care runs through discussions of maintaining devices, relationships, and infrastructures. Care also animates the sentiments that implant users (are supposed to) have toward cochlear implant companies, and users are led to believe that these companies care for them as well. Care and maintenance here are inseparable. According to María Puig de la Bellacasa (2017, 44), care can be a “concrete work of maintenance” with “ethical and affective implications”; she encourages us to look at the material, the affective, and the political as dimensions that are sometimes in tension. She poses the question: “What worlds are being maintained and at the expense of what others?” Cochlear implants are often considered to be “life changing” or to offer “a second life.” However, how do the everyday lives of recipients change after implantation?3 To answer this question, I attend to how families maintain cochlear implant “machines” in order to care for their children. I analyze this maintenance work in relation to how families are instructed to focus on caring for and maintaining one sense—the sense of audition—to ensure that their children listen and speak. I end this discussion by taking up Puig de la Bellacasa’s question about what worlds are being maintained in relation to other possible (deaf) world-building and maintenance projects.

Maintaining, Repairing, and Tinkering

In attending to maintenance and repair, scholars have analyzed the emergence of informal maintenance and repair workers who creatively tinker with and fix things—particularly mobile phones (Ahmed, Jackson, and Rifat 2015) and televisions and stereos (Prasad and Kumar 2009)—using recycled and repurposed parts.4 The Oxford English Dictionary defines tinkering as follows: “to mend (an item of metalware) as a tinker. More generally: to mend (any material object) in a clumsy, imperfect, or makeshift way; to attempt to repair or improve, to patch up.” Annemarie Mol, Ingunn Moser, and Jeannette Pols (2010, 14) argue for tinkering as a form of care and care as a form of tinkering in which people figure out what works and then make do. They define “good care” as “persistent tinkering in a world full of complex ambivalence and shifting tensions.” Similarly, Marianne de Laet and Mol (2000, 225) discuss their great love of the Zimbabwean bush pump, which can be tinkered with and adjusted. They find the pump endearing because of its “fluidity” and because its “boundaries are vague and moving.” The pump is “tailored to local circumstances,” and its “local manufacture guarantees that there will always be spare parts at hand” (236). In contrast to this body of literature on the care-full, pleasurable, sustaining, and important work of tinkering, cochlear implants represent a hard limit to this discourse, although one that is still subject to, in Mol et al.’s words, “complex ambivalence and shifting tensions.” While families and individuals can maintain external processors (albeit only for so long) through daily routines, they cannot tinker with, or repair, these devices. “Spare parts” must come from the cochlear implant corporations or their licensed suppliers.

A novel field of inquiry called “crip technoscience studies” critiques how disability-related technologies have been designed for and not by disabled people. According to Aimi Hamraie and Kelly Fritsch (2019, 2), “crip technoscience” encompasses “practices of critique, alteration, and reinvention of our material-discursive world.” It “braids together two provocative concepts: ‘crip,’ the non-compliant, anti-assimilationist position that disability is a desirable part of the world, and ‘technoscience,’ the co-production of science, technology, and political life.” Hamraie and Fritsch write of disabled makers who have tinkered with and hacked infrastructures and technologies, engaging in acts as diverse as making curb cuts, rigging air conditioners, and repairing wheelchairs. They stress “the transformative possibilities for crip hacking, coding, and making” (5) and argue that disabled people are designers and engineers (see also Hamraie 2017, 99). Similarly, Arseli Dokumacı (2019, 493) analyzes disabled people’s creation of what she calls “micro-activist affordances,” or “disabled people’s micro, ongoing, and (often) ephemeral acts of world-building, with which they make the world offer affordances that are otherwise unimaginable.” Dokumacı attends to how her interlocutors in Quebec and Istanbul find new ways of doing difficult everyday tasks, such as putting on a shirt with small buttons and opening a jar.

Scholars have foregrounded the liberatory power of tinkering and making and point to the ways that disabled people have always made, hacked, and tinkered with ramps, curb cuts, online platforms, and kitchen aids, among other things.5 While most of this theoretical and empirical work has taken place in the global North, it resonates with scholarship and applied and activist research concerning the emergence of low-cost and sustainable wheelchairs, prosthetics, and other disability aids and devices as a means of “improvising” (Livingston 2012) disability access. Crip technoscience, as a concept and practice, raises questions about who can hack, tinker, and design and the role of these practices in actually dismantling infrastructures of power—although it perhaps still foregrounds material infrastructure and objects. Recall that the original tinkerers were traveling repair workers who mended malleable metal utensils. In contrast, cochlear implants are literally unmalleable black boxes (it is the users who are seen as malleable). And the sledgehammers that were so useful for creating curb cuts in 1970s Berkeley, California, would simply destroy implants.

Fixing, Fixedness, Fixity, Fixation, and Fixes

There is a hard limit to what tinkering can do when it comes to cochlear implants.6 In contrast, a focus on cochlear implantation foregrounds how technology in general has become less available to be adjusted, hacked, or manipulated through other seemingly empowering practices. Given the increasing complexity of devices and the proliferation of intellectual property regimes, the affordances of many devices are limited in that the devices are “fixed.” Ruha Benjamin (2019, 137) reminds us that “to fix” can mean to repair; to make firm, stable, or stationary; or to influence actions, outcomes, or effects through improper or illegal means. As Sarah Besky (2017, 619) notes: “Fixity is less a negative correlate to freedom than a multidimensional condition that calls into question the sharp divide between freedom and bondage.” In similarly thinking through binaries and divides, Rashmi Sadana, Tarini Bedi, and I have suggested that “fix” as a concept serves “as a means of interrupting grand and teleological notions of development in order to consider what might occur between the poles of failure and progress, brokenness and wholeness, cure and disability, and decay and generation” (Friedner, Sadana, and Bedi 2018, n.p.). Like maintenance in relation to innovation, fixing differs from tinkering, hacking, and designing in the affective register it calls forth. It exists within more ambiguous and ambivalent (and less celebratory) regimes of valuation, although it is no less agentive or important. Fixing involves maintaining and being maintained. Maintenance functions as a fix, an attempt to keep breakdowns and the need for repair in abeyance (Domínguez Rubio 2016).

The concepts of “fixing,” “fixedness,” “fixity,” and “fixation” are productive for thinking about cochlear implants and allow us to approach these devices with more ambivalence. Cochlear implants function as a “fix” for deafness. They are “fixed” in that they are unavailable to be tinkered with. They constantly need to be “fixed” as they break down, albeit by and through specialized repair processes. Furthermore, cochlear implant recipients are “fixed” in relation to cochlear implant manufacturers, surgeons, and allied health professionals such as audiologists and speech and language pathologists as they become dependent on cochlear implants and need new parts, maintenance, and mapping. And in return the same cochlear implant users “fix” these other actors, who desire and require good outcomes in order to continue to expand cochlear implant infrastructures. The state and the mainstream media are “fixated” on promoting stories of successful cochlear implant outcomes. With actors and objects “fixed” in relation to each other and stakeholders “fixated” on one another and cochlear implant outcomes, an anxious and precarious order is maintained.

Madeleine Akrich (1992, 205) notes: “Machines and devices are obviously composite, heterogeneous, and physically localized. Although they point to an end, a use for which they have been conceived, they also form part of a long chain of people, products, tools, machines, money, and so forth.” Cochlear implants are examples of what Akrich calls “stabilized technologies that have been blackboxed” (211), and users are very much inscribed (208) by them, becoming particular kinds of listeners, attuned to whatever their maps determine to be speech and not noise, although noise will overpower speech. Users also enter into various prescribed routines of care and maintenance, to be discussed below. Akrich poses the question of whether the “composition of a technical object constrains actants in the way they relate both to the object and to one another” (206). I appreciate this focus on constraint: throughout this book I argue that implants constrain what is possible in terms of language (the child is to become a listening and spoken language person) and in terms of sociality (the child is to be social only through using specific senses and modalities). While cochlear implants are ostensibly life changing and unleash specific kinds of potential, they also constrain lives. Constraining is also a form of fixing. Inscribing is a form of fixing.

Much of the work on technology development and transfer in the realm of disability focuses on questions of accessibility, affordability, sustainability, and maintainability. In international disability and development discourse, there is a growing focus on the importance of assistive technology, which includes “hearing aids, wheelchairs, spectacles, prostheses and devices that support memory, among many others.”7 In work on wheelchairs and other assistive aids in the global South, scholars and practitioners have pointed to the importance of technology that is accessible and maintainable, and available to be tinkered with using locally sourced materials (although they do not use those words). In India, the growing field of assistive technology focuses primarily on individualized technological solutions. Incubators and accelerators funded by the Indian government and corporations encourage the development of sustainable assistive technology.

The World Health Organization, in collaboration with national government agencies and nongovernmental organizations, has produced handbooks such as Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings (2008) and Preferred Profile for Hearing-Aid Technology Suitable for Low- and Middle-Income Countries (2019), which explicitly discuss sustainable design and maintenance. The WHO, however, has not released any such guidelines for cochlear implants. While a hearing aid is considered to be a form of assistive technology, a cochlear implant processor is not. As an assistive technology engineer in India said to me, “How can a cochlear implant be DIY? It involves a surgery.” Yet the same issues of affordability, access, and maintainability exist for the external processor as for a hearing aid; batteries, coils, cables, microphone covers, and magnets, among other things, must all be maintained and often replaced. The precarity of depending on a thing that you may not be able to maintain—of needing to fix a device and being fixed by it in return—creates anxiety.8

Maintenance Routines

In October 2019 at the annual convention of the Cochlear Implant Group of India, Kiran, an audiologist and speech and language therapist at the Ali Yavar Jung National Institute of Speech and Hearing Disabilities in Mumbai, gave a presentation devoted to the “care and maintenance” of cochlear implants.9 In her talk, she prescriptively outlined all of the steps—both material and financial—that families should take to care for and maintain cochlear implants, starting immediately after surgery. Kiran noted that the internal electrode array does not need any “active care and maintenance practices” because it is not exposed to the outside environment. The external processor, however, requires careful daily and weekly maintenance. Every night, the external processor should be cleaned of sweat and salt deposits with a dry soft cotton cloth. After the processor is cleaned, it should be placed in a special dry box, which itself needs to be kept clean and maintained, because it functions properly only if its internal drying component is working. The processor’s rechargeable batteries should be charged for two to three hours nightly, and these batteries should be labeled, because it is easy to mix them up. Every morning, or at another set time during the day, special earphones should be used to test that the processor is working. On a weekly basis, the processor’s magnet and microphone should be cleaned with a cotton cloth and alcohol swabs. And every three months, the processor’s microphone covers should be changed. (So many “shoulds” here.)

Kiran noted that many parents do not follow this routine “meticulously.” She observed: “There is the initial period after switch-on, parents are very careful in using the device. It’s like a new device, new phone, or a new car that they have. So, they’re very meticulous in doing that, especially with listening checks and cleanings. Then, slowly, slowly as the time passes and the device is working fine, one day is missed, slowly one week is missed, and eventually then there is something going wrong with the processor.” Kiran and other professionals at AYJNISHD stressed the importance of these routines during families’ clinic visits, and they asked families to keep diaries of their maintenance work. AYJNISHD also held workshops at regular intervals to provide families with further information and maintenance protocols.

After describing the steps of material care and maintenance, Kiran moved on to finances (inseparable from material maintenance). She stated: “The cost of accessories is huge. It is very difficult for parents to get that on a regular basis. Cost of servicing and repairs after the warranty period is also difficult for them to maintain. The replacements in case there is a loss of processor is again a huge thing. This has been a big challenge for parents to maintain the device to buy accessories; even a simple cord which costs around two thousand rupees, people take around a month to buy that. And the eventual effect is that the child is off-ear during that period.” As discussed above, being “off-ear” can mean the loss of a sense, and it is associated with “behavior problems.” Note that what Kiran and others call “accessories” are actually essential, contrary to the connotations of the word, which is often used to refer to things that are extra, supplemental, or additional. The cable that attaches the processor to the magnet that connects the internal and external processors is an accessory, but the implant cannot function without it. Similarly, a working battery is essential. Cochlear implant surgery and activation are just the beginning of complex maintenance routines, both material and financial.

Activating Relationships

Cochlear implant activation videos are ubiquitous on YouTube and other social media. In a typical video, the camera focuses on a small child as the child’s implant is activated in a clinic. The child ostensibly hears or senses something, celebratory tears are shed, and the child is sent back out into the world—the child, the family, the implant, and the new sense. However, this is not all that happens when a cochlear implant is activated, or “switched on.” At the point of activation, which typically takes place two to three weeks after surgery at an audiologist’s office, the family is given a large kit in a cardboard box, a duffel bag or backpack, or a hard-plastic box, depending on the manufacturer. The kit contains individually wrapped spare magnets, cables, batteries, battery chargers, microphone covers, small tools for cleaning the processor, and a thick instruction manual, among other things. The kit is often visibly branded with the name of the cochlear implant manufacturer and can be quite jarring to see and to transport. I was overwhelmed when I received my kits for my two implants: the first was a futuristic-looking, shiny white hard-plastic briefcase that was difficult to close unless all the components inside it were stacked and aligned perfectly. It was bulky to carry home on public transportation, and I worried that I would drop it or it would be snatched out of my hands. The second was more manageable, a black nylon backpack with the yellow Cochlear label, in which all of the parts and components, some of them in hard-plastic cases, fit more easily.10

Most of the Indian families I met received no information about care and maintenance practices or accessories until activation. While I observed audiologists discussing the external processor with future implant recipients during orientation sessions, I never saw a discussion of cables, coils, or even batteries. Families typically did not see these things until activation day. Audiologists informed me that their practice was to activate the implant and then give the kit to the family. They would then send the family, lugging the kit, to lunch or tea “to process everything” and tell them to return to the clinic afterward. At that point, the audiologists would explain the care and maintenance processes and go through the objects in the kit with the family. Although these things are not included in the cochlear implant activation videos that circulate online, for the family, receiving the kit and learning about the different devices, cables, batteries, and spare parts is a significant part of activation. At switch-on, a new sense is activated, and the family is given instructions and objects for maintaining this sense. Maintenance routines like the one described by Kiran must be adhered to from that day onward.

The central government’s cochlear implant program, the Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances scheme, provides funding for the cochlear implant surgery, the external processor, cables, and batteries that are intended to last for at least two years, as well as two years of therapy and implant mapping (see chapter 1 for an overview of the ADIP scheme). If the internal device stops working, this is considered a device failure, and another surgery is required. No records are kept concerning the numbers of device failures, and the state and corporations are not required to report these numbers. While internal device failure is a significant issue, there is much more discussion of external processor maintenance. Some state programs, notably those in Kerala and Tamil Nadu, provide lifelong maintenance support, including free replacement parts, but the processes that families must go through to get replacements and repairs involve many bureaucratic steps and are often inconsistent. Stories abound of children who have become “nonusers,” or gone “off-ear,” with the blame for their noncompliance placed squarely on the families for being lazy or careless, or for not saving up the money needed to maintain their children’s implants (Farmer et al. 1991; Moran-Thomas 2019). This blanket use of the category of nonuser ignores the fact that people have many reasons for going off-ear and situates the category of user as an unquestioned good (Wyatt 2003).

No government agency or NGO has undertaken any systematic follow-up on the various schemes, which is ironic given that the state is diligent about recording the numbers of surgeries completed. As children and families are “lost to follow-up,” neither the state nor other stakeholders actually know the number of nonusers. These previous users are not fixed in place or hearing status, after all. Government officials and other stakeholders know that going off-ear often happens because people cannot afford maintenance or repairs, but it is easier to critique parents than it is to blame political economic structures. A surgeon who previously worked with the ADIP scheme told me that 60 percent of implanted children have become nonusers, while a government employee working on the scheme itself estimated the proportion of nonusers at 20 percent. The point is, no one really knows. In a particularly vivid critique of the ADIP scheme, a deaf education expert told me about a family she had met in northeast India: “There were three deaf children in the family, all of whom had been implanted, and they were running around with the nonworking implant processors dangling off their ears.”

Mary-Jo DelVecchio Good (2001) argues that biotechnology functions as a “biotechnical embrace,” another example of a fix. She analyzes the tendency among medical practitioners to opt for high-technology solutions that feel good and have a certain allure attached to them; she describes these practitioners as “embracing and being embraced” by this technology because they see it as offering promise and potential (399). I find this metaphor especially apt in the case of cochlear implants, especially as the embrace is seemingly bidirectional. Consider the temporality and affectivity of the biotechnical embrace: At what point does it stop being an embrace? What happens when one embracer simply lets go? When does an embrace become a strangling? In an interview, the India-based director of a leading cochlear implant manufacturer stressed that “the cochlear implant is a lifetime device” and that “children are married to the company for life.” He viewed this positively, telling me that his corporation is in the business of forming and maintaining relationships. We might also consider that the Cochlear corporation, in its marketing materials, calls Cochlear recipients “members of the Cochlear family” and that one of its slogans is “Hear Now. And Always.” The failure of the embrace to “always” remain an embrace reveals that such kinship, while fixed, is always in danger of coming up short and/or failing.

In the United States, a surgeon commented that implanted patients often become more “attached” to their implant corporations than, say, people with pacemakers do to the manufacturers of those devices; he suggested there is something more relational about cochlear implants. On listservs and Facebook pages, parents of implant candidates agonize over which brand of implant to choose (if they have choices), and heated debates break out about which implant manufacturer is better (these debates are called “brand wars”). Different manufacturers have their own WhatsApp groups, Facebook pages, YouTube channels, and in-person support groups. At conferences such as the AG Bell annual conventions and the meetings of the Hearing Loss Association of America, manufacturers host breakfasts and other gatherings exclusively for their own users. Implant corporations also organize cruises and other social events for their recipients. While doing research to decide which implant corporation I should choose for myself, I observed further that it can be difficult for users to identify with one another across devices. At an implant user support group, for example, someone would bring up a problem she had—not being able to hear well in noise, for instance—and someone with a different device would comment that he did not have that problem. In the United States, choosing a brand can be especially fraught, because manufacturers’ representatives are often implant users who mobilize their own personal implant stories to build rapport.

In India, the heightened role of emotions and relationships is equally present, although corporations do not employ users as marketing representatives or salespeople. They do, however, often feature users and their families in inspirational videos that they post on YouTube and other social media platforms (the families are not compensated for appearing). Implant corporations also invite users to engage in public speaking on behalf of the corporations and to give speeches at corporate events. In lieu of users as salespeople, corporations utilize other tactics: for example, in 2015 Cochlear enlisted the (hearing) cricket star Brett Lee as its first “global hearing ambassador,” and when Lee travels to India, which he does often, he interacts with select successful Cochlear recipients and sometimes plays cricket with them. Corporate representatives make home visits and even “simply show up” at hospitals or clinics where families are seeking information. A marketing person for one company told me that she must often assuage concerns and fears, as families are worried about the financial investment they are making and the fact that their child is undergoing surgery. Her role is to comfort and reassure families through building relationships with them.11 These visits and marketing efforts are directed at families purchasing implants on the private market; government programs typically contract with one manufacturer for a set period of time, leaving families without a choice.

In contrast to the biotechnical embrace, some parents describe their relationship with the cochlear implant corporation as “a hostage situation.” They did not know that they would have to spend money “for life” on expensive accessories and that there is no turning back or divorce from the device or the corporation. This is true for audiologists and speech and language therapists as well, as Kalpana expressed in the statement quoted at the beginning of this chapter: speech and language therapists also cannot divorce implant corporations. A journalist told me about families who are reluctant to criticize cochlear implant manufacturers publicly because they are afraid of retaliation; they see this relationship as a potentially abusive one that they have to maintain. There is not even the possibility that they might “remarry.” One cannot use one corporation’s processor with another corporation’s internal electrode array, and it is rare for a user to have one corporation’s internal device replaced with another’s. While being married to more than one company is a possibility in bilateral implantation, this is also rare, as individuals and families tend to stick with one manufacturer. The only possibility, then, is to go off-ear, or become a nonuser. It is important to note, however, that going off-ear really does mean going off-ear, as in many cases, residual hearing is not preserved. Postimplantation, an individual cannot return to using hearing aids. The embrace, the fix, includes loss as well.12

After my second implant surgery, I was discomfited that I could no longer hear the (low-pitched) sound of my child’s footsteps coming down the stairs in the morning or the rumbles of trains on the tracks behind my house. When I discussed this loss with my surgeon, he commented that once my implant was activated, I would not miss not hearing these sounds. He suggested that once my implant was up and running, I would enter into a new relationship with environmental sounds. As Benjamin (2019, 151) writes: “If people do not have the choice to wiggle free from the suffocating embrace of techno-benevolence without repercussions, that is a sign of fixity—an innovation that constrains.” As noted above, cochlear implants, in addition to fixing hearing, fix people in relationships with other people and corporations, albeit without offering stability. Perhaps if this were the case—if implants remained “firm, stable, or stationary” (Benjamin 2019, 137)—other aspects of fixity might be more palatable.

Caring for Lifelines

There is often a honeymoon phase immediately after activation when the family is anticipating or seeing some benefit. During the summer of 2018 I sat with two fathers and their two-year-old sons in an audiology and speech and language clinic in Delhi. Both of the boys were recently—in the past two months—implanted, and the fathers were brimming with optimism for their sons’ futures. Each morning, they attended an early intervention program, where they learned how to talk with their sons and do auditory exercises. In addition to chatting with them about how rare it was to see fathers instead of mothers accompanying children for therapy, I asked these men how they were approaching the issue of maintenance, as their children were so young and potentially less than diligent in caring for their external processors. One father told me, “Madam, see, we take so much care of the machine, maybe more care than that of the child. I am telling you the truth. Now this is his lifeline.” When I asked him what he meant by “taking care of the machine,” he said, “There is a certain way of keeping it in the night, whatever was told to us we follow all the things. We keep it in its box where we are supposed to keep it. We have told [the child] that the machine should not be removed with a jerk, you have to take it out with love and care. He takes it out very slowly and gently and hands it over to us, meaning that he has also realized how valuable and important that machine is to him.” While this father was joking about caring for the machine more than for his child, I am struck by his words. The implant, as a “lifeline,” becomes a means of ensuring that the child has a meaningful life. Material and emotional care are entangled. An implant is a lifeline to be handled with love and care, a lifeline that sets a child on a trajectory—one that is fixed and difficult to get off of.

When I asked the fathers how else they were caring for the cochlear implants, the other one said, “I have instructed his mother to protect him from other kids. We have instructed the other kids who play with him that they should not beat him, don’t push him, and if you want to tell him something tell from some distance. Don’t put any pressure on him and be calm or gentle with him.” Similar to this father, many mothers told me that they would not permit their children to play outside without them supervising, because they did not want the implants to get damaged.13 (I thought about these mothers’ concerns when I watched videos of Brett Lee playing cricket with implanted children on well-manicured lawns in Mumbai, as these mostly upper-class children did not seem worried about potential implant damage.) Taking care of the cochlear implant here meant observing the child (fixating on him) even more carefully than before and monitoring, sometimes restricting (fixing), his interactions with other children.

Mothers told me that they would not let their implanted children go outside in the rain for fear that their processors might be damaged. On a particularly rainy day during the summer of 2018, I went to visit an early intervention NGO and preschool program in Delhi. I had managed to find transportation to the NGO and was pleased with myself because I had even arrived early. However, the NGO director told me that most likely, very few or no children would come, because parents worried about implants getting wet. She was right—only three children showed up that morning. I also heard about situations in which, ironically, families sent their children to deaf schools rather than mainstreaming them because the normal schools told them that they would not be responsible for “taking care” of implants. This question of “who takes care of the implant” comes up quite frequently in schools. Families told me that they had engaged in complex negotiations with school administrators and classroom teachers because they were concerned about other children somehow dislodging or damaging their children’s processors; they were distressed that schools refused to offer any help or support to protect their children’s implants. In contrast, deaf schools had experience with hearing aids and ensuring that children wear them.

Compounding parents’ anxieties about implant processors breaking or being lost is the expectation that children will wear their processors during every waking hour, from morning to night.14 Mothers of small children must frequently adjust their processors or fix them back into place after the children pull them off or move them around; these mothers are fearful about loss, damage, and theft all the time. Audiologists and speech and language therapists stress that children should be constantly “on-ear” and listening nonstop (just as mothers are ideally talking nonstop) in order to “catch up” to their hearing peers. Therapists argue that if a child wears hearing technology for four hours a day, it will take that child six years to hear what a typically hearing child hears in one year. Therefore, a child should ideally wear hearing technology for ten to twelve hours a day. As a therapist instructed a parent during preimplant counseling at AYJNISHD: “You have to see to it that she wears the machine all the time. If she is ill, you administer the medicine forcibly, no? Why? Because you know that this is for her well-being. Similarly, the machine is also for her well-being. . . . Can you remove your ear? No, right? You hear throughout the day, till you sleep. . . . So, make it a point that she wears the machine throughout the day till she falls asleep.” In regard to this pressure to be constantly “on-ear,” a thoughtful audiologist commented to me: “Why do we say that individuals will not be off at any time? That creates a stress on us. Why our stress that twenty-four/seven it will be ‘on’ as such?” Recall the discussion in chapter 2 of the increased cognitive loads of deaf children and adults, and the effort required to hear through and with degraded signals. Constantly wearing cochlear implants causes stress for users as well.15

Maintaining Unequal Sensory Potential

A notable feature of the latest cochlear implant processors made by the Cochlear corporation is that they offer data tracking—audiologists and speech and language therapists can track how many hours per day implanted children are wearing their processors as well as how many hours they spend in speech and noise environments. The therapists can then use this information, easily accessed via a smartphone app, to prompt or pressure families to make sure that the children keep their processors on for longer durations and that they are provided with enough spoken language.16 (An American speech and language therapist called this feature “better than a nanny cam.”) However, only the latest versions of Cochlear’s processors offer data tracking, and the majority of Indian children with cochlear implants do not have these processors.

The central government’s ADIP scheme and most state government programs offer a basic cochlear implant package without sophisticated noise-cancellation features or noise programs. The corporation that wins the government contract to supply the implants is required to service the specific implant processor model provided for a set number of years. The corporations have worked to ensure that the internal components remain compatible with newer external processors, so that people do not have to undergo unnecessary and redundant surgery when their processors need to be replaced. After a certain point (the time frame differs around the world), external processors become obsolete, and users must “upgrade” because the corporations no longer support (or care for) obsolete devices and spare parts are no longer available. In her presentation at the CIGI conference described above, Kiran, the AYJNISHD audiologist and speech and language pathologist, called this replacement of an obsolete processor a “compulsory upgrade.” “Compulsory” is an appropriate adjective here, in that such an upgrade is coerced. Clear class stratifications and obvious ethical (and sensorial) variability (Petryna 2005) are fixed into the global implant market. I am troubled that children need higher-end processors in order to sensorially “experience more.”

Upgrades, planned and geographically stratified obsolescence, and the existence of a private market reveal deep inequalities in terms of how people hear with and experience implants. In 2016, Cochlear unveiled the Kanso, a wireless processor that sits directly on the magnet location, with nothing sitting behind the ear; it can thus be hidden entirely from view by the user’s hair (if it is long enough) or a hat. The Kanso, according to professionals and families, is a status symbol because it is considered to be “discreet” and results in children being, in the words of a Cochlear India marketing video, “sound-conscious and not self-conscious.” In the same video, a therapist comments that because the processor sits directly on the implanted child’s head, it is integrated into the child’s anatomy—a dubious yet compelling claim.17 In another Kanso marketing video, a young college graduate who studied fashion design describes her Kanso as a “chic” fashion accessory that she can choose to either hide or reveal.18 The Kanso and other higher-end implants come with accessories such as television streaming devices, mini-mics, and phone clips; these accessories transmit sound directly into the implant processor and make it easier for the user to hear in noisy situations. In the video featuring the fashion graduate, she drinks juice with a friend in a noisy café. Her friend wears the mini-mic, which enables the pair to chat effortlessly despite the noisy surroundings. In these marketing videos, users, parents of users, surgeons, audiologists, and speech and language pathologists extol the benefits of the Kanso and describe it as offering the absolute best and most sophisticated technology, unparalleled by anything else that has come before or that currently exists.

This representation of the Kanso and the wonders of its accessories—which allow a user to seamlessly listen to music, have effortless conversations in crowded cafés, and hear teachers’ voices clearly even from the backs of classrooms—brings up questions about access and equity. Why shouldn’t all children be able to hear seamlessly in their classrooms without significant listening effort, especially when professionals constantly tell us about the debilitating effects of noise on hearing and the importance of the signal-to-noise ratio for deaf and hard-of-hearing people (Iglehart 2016)? The Kanso retails in India for about Rs 14 to 18 lakh (US$18,500–$24,000); the prices of other processor models start at about Rs 6 lakh (US$8,000).19 The Kanso and other newer implants offer programs that “read” or “scan” the environment and adjust background noise, zooming in on speech. In marketing videos such as the ones discussed above, Kanso recipients note that these programs make it is easier for them to hear, and that they experience “finer hearing.” Parents who provide their children with the Kanso are complimented in these videos for wanting to do everything possible for their children and giving them the best options to maximize their potential in life. (Note that while all of the cochlear implant manufacturers produce new and upgraded processors every few years, the Kanso is unique in that it is not a behind-the-ear processor.)

When I asked an audiologist about the difference between the basic model provided under the ADIP scheme and more expensive implants, she replied that the difference was like driving a “Tata Nano versus a Mercedes-Benz. Both cars will go to the same place, but the latter might be a smoother ride.” Comparing these two cars is an interesting choice, as the Nano, a largely failed experiment in creating an affordable car for the masses, will transport you from point A to point B, but it is less safe, does not have shock absorbers, and might lack sufficient air-conditioning in searing summer heat. You will most likely arrive at your destination sweaty and frazzled from road traffic and with a sore behind. According to this audiologist, the government-provided processor offers basic hearing: “It is good enough for those who can’t afford better, and it enables a child to hear. It has no noise control and no scanning ability but it provides a basic need, hearing, that is taken care of.” Her statement implies that this basic processor does not provide “the finer aspects of hearing.” The basic Cochlear processor that is sold in India is marketed as “designed for humid and dusty climates and environments and to withstand the rough and tumble of everyday life. It is . . . tough and reliable.”20 What kind of hearing is “good enough”? What is the difference between “basic” and “finer” hearing? It seems to me, however, that being able to hear in noise and to distinguish speech is indeed a “basic need.”

I am left with lingering unease. According to researchers and practitioners, newer processors yield better results in noise.21 Of course, practitioners stress that every child is different and that some children with older technology do better than others with newer technology (although this focus on difference and diversity is at jarring odds with the certainty with which cochlear implants are seen as producing successful outcomes across the board). Cochlear implants are held up as the gold standard in treatment, often compared to (other) lifesaving devices. But while cochlear implants might be the gold standard in theory, the sensory hierarchies that exist as a result of costs within political economic systems must be acknowledged.

Deaf children are not given a “whole sense” with basic processors, and providing them with such processors sets them up to be behind in a context in which they are already working through “degraded signals.” We are talking about senses, not cars. I understand that providing children with older models of processors that are obsolete in other geographic contexts does not violate international ethical guidelines or best practices. I also understand that government administrators, surgeons, audiologists, and speech and language pathologists operate under the logic that “something is better than nothing.” I critically consider what this “something” is and what other “somethings” might potentially exist, even when people claim that the alternative is “nothing.” In the next chapter, I discuss the analytics of becoming and potentiality and the ways that cochlear implants are held up as technologies that can make deaf children “become normal” or “become near to normal” through normative sensing. Cochlear implants are seen as offering potential, which ostensibly recedes as a child gets older and the so-called critical period is passed. However, what happens to potentiality when children are working with and through older “basic” technology, and how are children afforded different sensory potentials?

Even a processor designed to “withstand the rough and tumble of everyday life” must be maintained. Coils and cables break, magnets become dull, and batteries need to be replaced. Aruna, an AVT practitioner, told me that “providing a cochlear implant to a child through the ADIP scheme is like giving a Mercedes to a street vendor.” She wondered how a street vendor would ever be able to maintain an implant processor. Other people with whom I spoke did not go that far with classist comments, although car analogies abounded, perhaps because a car is also a significant family investment and an aspirational object. Another therapist told me that while the government was providing the car (the implant), she thought it was up to the families to pay for the gas (maintenance). These analogies can go only so far, however: a car is not implanted inside a person.

Some sympathetic government officials pointed out what they saw as the irony of the ADIP scheme: it was specifically designed for families below the poverty line, families that would be unable to afford to pay for maintenance. The officials also asserted, however, that if the implants worked, the families would become “motivated” and “find a way” to fund maintenance. Therapists often counseled families to keep a piggy bank with the child’s name on it and deposit Rs 500 to 1,000 (US$6.75 to $12.50) in it each month, but for many families, even this amount was prohibitive.22 At an NGO program providing implants, families were told that they needed to keep Rs 50,000 (US$666) in a bank account to pay for implant expenses. While they did not have to pay for the implant or the surgery, the NGO told them, they had to contribute to therapy costs so that they would “value the implant.” For many families, however, financially “valuing the implant” existed in competition with paying for food, educational fees, and other medical expenses. A family might have to make the impossible choice between paying for an implant cable and paying the school fees for another child, for example.

This discourse about “not getting anything for free” was ubiquitous. A surgeon at a prestigious government hospital stated: “If people get it for free they will not value it. If I give you this pen for free, will you value it? No, you won’t try to keep it safe or maintain it.” Another surgeon told me: “What I tell the parents is, you people have a cell phone, you have a TV, you have cable. Every month you have certain expenses. So, why can’t you have an expense of a hearing implant? Why should the government do everything throughout their lifetime?” Switching to first person and taking the perspective of an imagined implant recipient, this surgeon went on: “The minute I know the government is going to give, I am not going to take care of my processor.” How could he be so certain? And from another surgeon: “Just as you would do for clothing or various other things, bettering your home, you should factor in something for the maintenance. Okay, you got the car for free, but you need to take care of maintenance.” Here “taking care” is entirely financial and ignores all of the other ways in which families “take care” of implants and children.

I do not know why government bureaucrats and professionals think that families would not value cochlear implants (similar arguments are made about aids and assistive devices such as wheelchairs and prosthetics).23 Recall, for example, the father quoted above who said (only half jokingly) that he treats his son’s implant more carefully than he treats his son. When surgeons and professionals tell families things such as “After the implant switch-on, your child will have a new life,” or, as it is commonly put in Hindi, “Switch on ke bad dusara janam hoga,” why would they think that families would not value that life, or specifically the device that can activate that life? Indeed, the implant ostensibly activates an immanent set of relations with and in the world that are valuable beyond the value of the implant as a consumer good. The rub is that these relations are fixed by and through the consumer good itself.

A Mumbai-based NGO that funds cochlear implants as one of its flagship programs recently decided to curtail the number of implants funded each year because the foundation must now also focus on maintaining the devices it has provided. The program manager told me that the foundation realized that families are unable to maintain the devices on their own, and the foundation is ethically bound to help them. The NGO started this program because it saw implants as “life changing,” and so how could it allow the implants to stop working and lives to change back? The program manager said that she could not say no to families and that she recognizes that there is now a lifetime relationship between the families and the foundation (a statement similar to that made by cochlear implant manufacturers regarding their users). Although she did not say so, it is worth noting that there is also a lifetime relationship between the foundation and the cochlear implant corporations. The most important thing, the program manager emphasized, is that children do not become nonusers, or go off-ear. “Life changing” can go either way.

Becoming a Nonuser and Going off the Path

What happens when nonuse occurs? Not using something might mean not becoming or unbecoming (Ahmed 2019, 45); it might also mean becoming something else and opening up other possibilities. The use of one thing or embarking on one useful path serves to limit other (also potentially useful) options. When one starts walking along a well-used path, the path seems commonsensical or natural. As Sara Ahmed notes (2019, 42), “The law of most paths: following a path makes a path easier to follow.” In chapter 1, I discussed how the state hopes that its central government implant program will make cochlear implantation a well-trodden path. As I noted, Joint Secretary Sharma spoke of building cultures of surgery, implantation, and therapy and bringing down the costs of implants. I wonder, though: What about the work needed to maintain a path? And how do you decide not to follow a path or to seek out another path? Families are told that cochlear implantation is the only option for their deaf children, the only path they can use. It thus seems the obvious thing to do.

I think about a need for multiple paths particularly in the aftermath of India’s massive lockdowns during the spring of 2021, a response to the Covid-19 pandemic by the Bharatiya Janata Party government. Many families were forced to return to their villages, where they had no access to audiology or therapy services. In extreme cases, they even left their children’s implants and accessories behind as they frantically packed their belongings to leave cities before lockdowns started. The pandemic, which continues at the time of this writing, has resulted in ongoing restrictions to and disruptions of movement, medical care, education, and employment as well as significant supply chain interruptions.

Before the pandemic, during the summer of 2019, I came across an interesting object in the offices and clinics of many Indian audiology and speech and language pathologists: a small cardboard container for office supplies, made to look like a yellow-and-black ambulance. Printed across the sides, top, and back of the ambulance, in capital letters, were two sentences: “HEARING LOSS IS AN EMERGENCY” and “ACT NOW.” In most cases, the professionals who occupied those offices and clinics agreed with the urgent messages (although they commented that the cardboard container was not particularly durable). This ambulance was part of the Cochlear corporation’s marketing strategy designed to emphasize the importance of cochlear implantation for young children—sooner rather than later and as early as possible. The ambulance, apparently, would carry the child along unblocked roads to a hospital, where the child would undergo cochlear implant surgery. But what happens when a pandemic, an emergency like Covid-19, throws a wrench into that trajectory? And what about other complications such as supply chain breakdowns, inability to pay for maintenance, lack of qualified surgeons, audiologists, and speech and language therapists, or desires for different futures? What other trajectories are possible, and how does the discourse that “deafness is a neurological emergency” disallow other possibilities?

On March 26, 2020, the Sydney Morning Herald published an article headlined “Kids with Hearing Loss Will Suffer from Surgery Delays: Cochlear” (Danckert 2020), which quoted Cochlear’s CEO:

A child born with hearing loss is a neurological emergency. A child born with hearing loss isn’t getting the parts of their brain that are there for hearing stimulated with sound. The quicker that gets stimulated with sound the quicker that part of the brain learns what sound is, learns what speech is and to wire itself for speech and hearing. Earlier cochlear implantation for children born with hearing loss leads to them obtaining age-appropriate speech and language faster than delayed implantation.

The article reported that because “elective surgeries” had been halted as a result of the pandemic, children who needed cochlear implants were not getting their surgeries. The message was that the longer a child waits to be implanted, the less potential that child has to become listening and speaking. And meanwhile, the families of deaf children were sitting at home and waiting for surgeries to resume. Families approved for the ADIP scheme waited to be called for surgery, not knowing what else to do. (Also at the time, Facebook and other social media platforms were filled with stories from around the world about people whose dogs had eaten their cochlear implant processors and who could not get replacements, people who could not get audiology appointments for cochlear implant mapping, and people whose surgeries were delayed indefinitely.)

I was, and remain, concerned about this representation of deafness as a neurological emergency and the urgency attached to it: “ACT NOW.” Because of Covid-19, families have not been able to act now, or at least not in the ways they are supposed to act. Nor have they been given options for other paths on which to embark. Such a focus on hearing loss as an immediate emergency and crisis requiring a present response also obscures the lifelong process of implant maintenance. Since the beginning of the pandemic, many families of implanted children in India and internationally have been unable to have devices mapped or repaired and have lacked access to batteries and essential accessories.24

I am reminded of a conversation that I had with an Indian cochlear implant surgeon. In addition to being an ENT practitioner and surgeon, Dr. Swarnad runs programs offering early intervention and elementary school classes for implanted children (I discuss his approach to his work in chapter 2). I asked Dr. Swarnad what he thought about the messages on the Cochlear ambulances, and he replied, in contrast to most of the other surgeons and therapists with whom I spoke, that he does not think that deafness is an emergency per se. However, he said, a young deaf child who does not feel deficient or lacking now will come to feel that she is missing something when she is old enough to enter school. This feeling of inferiority will develop when she is unable to do the same things that other children can do because of structural barriers in educational and employment institutions. Dr. Swarnad also noted that schools are not designed for children who cannot participate through listening and speaking. I appreciated his recognition of these structural issues and wondered if framing them as an emergency would also be productive. That is, what if instead of a focus on deafness as a neurological emergency, there is recognition of the existence of an (infra)structural emergency around access to education, employment, and everyday life that exceeds the boundaries of an individual deaf child and her neurology? Returning to Ahmed’s (2019) provocations on use and AVT practitioners’ claims that deaf children’s neural pathways need to be used or they will be taken over and reorganized, I see these reorganized neural pathways as paths in and of themselves. Indeed, Ahmed ultimately calls for us to refuse instructions and get off the (narrow) path, to see misfitting as offering an opportunity to use another path (199, 204).

Families often have no idea that other possible paths exist, that there are other ways of becoming and other sensory infrastructures to engage. In an April 2020 vlog posted on Facebook, an Indian Sign Language–speaking Deaf activist, reflecting on deaf people’s experiences during Covid-19, urged:

Break down that wall and take a chance in learning sign language. It would be a great alternative for you when the batteries in your hearing aids/Cochlear Implant die. You’ll be surprised at how there is a whole new world for you to join. You will realize you don’t have to work so hard to “fit in” compared to trying to fit in with Hearing people.25

In these words, which the activist transcribed into English to accompany his ISL vlog post, we see a new paradigm: a move from “maintenance problems” to a focus on world building, or a “whole new world for you to join.” Addressing not only deaf people but also parents, school administrators, audiologists and speech and language pathologists, and state officials, this activist encourages all to learn to sign and to support sign language. In doing so, he focuses on building new kinds of sensory infrastructures that include deaf and hearing signers, teachers and early intervention workers who know and teach in ISL, sign language interpreters, and audiologists and speech and language pathologists who will inform families about and encourage different kinds of outcomes. As with cochlear implants, however, this sensory infrastructure comes with issues of maintenance and sustainability, in that the state has not recognized ISL, and ISL-speaking teachers and interpreters are financially, pedagogically, and politically undervalued.

A faculty member at the Indian Sign Language Research and Training Centre argued that “ISL only requires the use of two hands and no fancy technology.” While this is an overly simplistic argument that ignores that the “body is always-already technological” (Manning 2007, 117), it is provocative to consider how ISL might require fewer resources in terms of technological infrastructure and more resources in terms of human labor and human infrastructure, such as ISL teachers and interpreters. A competition is set up between ISL and cochlear implants, and when families are actually told about both, they are further instructed that they must choose one or the other. This competition is promoted by the state itself as it creates fixed categories of people. In a press release related to a September 2018 event for International Day of Sign Languages, for which the theme was “With Sign Language, Everyone Is Included,” the Indian Ministry of Social Justice and Empowerment stated:

Sign language has been used for over centuries. The language capabilities of deaf children who use sign language are better. There is no advantage to delaying exposure to sign language, and research on the development of language has found that early exposure reduces the risks of language development. Lot of intensive therapy is needed after CI, even then the success is not guaranteed. (Press Information Bureau 2018)

The state—the same ministry—offers cochlear implants as a flagship program while also denigrating implantation without investing substantial resources in the thing that it represents as an alternative. This simultaneous discursive and financial over- and underinvestment and creation of competing infrastructures reveals state ambivalence and is also a form of violence.

To be clear, the state has not invested in creating infrastructure that would enable ISL to be a visible path for families. The Indian Sign Language Research and Training Centre ran pilot ISL-based early intervention programs in four states, but none of these programs were extended or renewed, despite considerable enthusiasm. Employees at the ISLRTC are endeavoring to create (and ultimately maintain) a new ISL infrastructure, but they are doing so without funding and resources. When I observed an ISL training course for parents that was part of a pilot program, I saw parents eagerly learning ISL and expressing enthusiasm for the opportunities it offered them to (finally) have conversations with their children. As an employee at the ISLRTC told me, ISL is often the last resort for families after they have gone down many paths, but when they do find it, a new world opens up. Deaf and hearing activists are attempting to make ISL more visible through social media and are asking the state to foreground ISL in education, interpreting, and everyday life.

When I talked with Indian audiologists, speech and language pathologists, and surgeons about ISL, their response was that “it is difficult because not many people know it.” Deaf activists are trying to create a world in which more people know (about) it. In one remarkable instance, they were successful: the chief orator at the 2019 CIGI conference was an experienced audiologist and speech and language pathologist who used her platform to stress the importance of ISL and to point out that both Indian disability laws and the UNCRPD mention sign language. She asked those present to stop ignoring ISL’s existence and to educate themselves about it. The audience listened politely, and then subsequent presentations returned to the topics of surgical techniques and the importance of bilateral implantation.

Deaf children should not learn ISL simply because cochlear implants are difficult to maintain. Families ought to be made aware of the many paths on which they can travel, and as more paths are used, the easier they will be to embark on. As Ahmed notes (2019, 41), “The more a path is used, the more a path is used.” There is always the risk, however, of going down the path of an institution like the Lady Noyce School in Delhi—a state-run school filled to the brim with deaf children from all over the National Capital Region, located on prime land close to the city center, but not maintained. The school is overcrowded and has many vacant teacher positions. Much of the time, the students are ignored as the teachers sit outside and chat. Children, many of them from families living below the poverty line, peer out through the school’s broken or bare windows, and it is rare to see an implant or a hearing aid on any of their ears. What one does see is ISL being used. This use of ISL is remarkable, because, as a government administrator pointed out, the school has no language policy and teachers do not use speech, sign, or total communication; they do and use “nothing,” he said, rather dramatically.

The Delhi government recently took over part of the school’s land, its poorly maintained recreation grounds, for its Social Welfare Department. During the summer of 2019, I met the principal of Lady Noyce School, a newly transferred social worker who was also new to deaf education. Afterward, I went next door to the Social Welfare Department, where I met the administrators overseeing the school. They were conducting interviews to fill some of the school’s empty teaching posts and permitted me to observe. I asked if the interviews included testing for sign language competency, and the interviewers, including the Indian Administrative Service officer overseeing the department, and I had a conversation about the importance of ISL. One of the interviewers was a senior teacher at the school, and he said that he knew no ISL when he first started teaching, but the students had taught him all the ISL that he now knows. The IAS officer asked me and the other interviewers, “Why are we not paying the children, since they are doing the teaching?” This school is poorly maintained and overused despite its run-down condition. It is a place where deaf children learn ISL from other deaf children and form lasting relationships; it offers formative relational infrastructure despite its lack of material and pedagogical infrastructure. How might this school become well used, I wonder?

When thinking about this Delhi-based school, I am reminded that a cochlear implant surgeon in another Indian city told me that all of the deaf schools in that city would shut down because implanted children would no longer need these schools. After he told me this, I visited the schools in question and learned that they are just as well used and underfunded as ever. They currently serve a crucial function: a principal told me that increasingly her school was enrolling deaf children, some of them with implants, who previously attended mainstream schools and learned nothing. The teachers had to do significant work to bring these children up to grade level.

Brett Lee, the famous cricket player, now retired, who serves as Cochlear’s “global hearing ambassador,” is quoted on the company’s website: “I can’t imagine cricket without sound—on the field not hearing the appeals and the crowd, off the field not hearing team mates, or at home not hearing family. I can’t imagine it. A cochlear implant can change all of that. I’ve seen it happen. The implant takes a person from silence to sound. It is a wonderful, life changing moment.”26 This statement, and others like it, represents very clearly what Alison Kafer (2013, 4) calls “ableist failures of imagination.” It is these kinds of failures of imagination that contain people to one path and keep them from expanding what is imaginable; recall the “new world” invoked by the ISL activist quoted above. (Internationally, there are many wonderful cricket players who are deaf.) How might families learn about the many paths, the many sensory infrastructures, that exist and learn that there are forms of care outside of caring for a machine and a single sense? Becoming a nonuser can be the beginning of a new path. In the next chapter, I explore tensions around becoming and argue that becoming normal constrains possibilities for being, sensing, and relating.