Celebratory Cochlear Implants

Dr. Anup is the former director of the Ali Yavar Jung National Institute of Speech and Hearing Disabilities in Mumbai. He is an audiologist and speech and language pathologist in addition to a government bureaucrat and is known for being impassioned, especially when it comes to asserting his expertise. AYJNISHD is a national organization under the central Ministry of Social Justice and Empowerment that functions as a one-stop shop for deafness and hearing impairment in India. It offers educational courses in audiology, speech and language pathology, special education, and Indian Sign Language; performs hearing screenings and early intervention; conducts research on early intervention, speech and language pathology, and special education; and coordinates and distributes aids and appliances such as hearing aids and cochlear implants. As a government institute, it offers services for free or at prices that are much more affordable than those available at private clinics. There are regional centers under AYJNISHD across India (in the north, south, west, and east of the country) to provide comprehensive education, training, and coverage.

I met with Dr. Anup to learn about the central government’s Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances scheme, which since 2014 has included cochlear implants, in addition to other aids and appliances such as hearing aids, canes, wheelchairs, scooters, and calipers. I had logistical questions about the ADIP scheme, but Dr. Anup in turn had other ideas he wanted to share, as can be seen in the exchange above. He wanted to stress that India’s first central government–sponsored cochlear implant surgery happened on December 3, 2014, on International Day of Persons with Disabilities, an annual observance established by the United Nations in 1992. In doing so, he perhaps wished to make a broader point about the newfound place of cochlear implants within India’s larger disability landscape and the trajectory of the work of the Ministry of Social Justice and Empowerment. (He was disappointed that I did not immediately pick up on the significance of the state’s decision to schedule the first cochlear implant on that specific date.)

Dr. Anup had a view of how International Day of Persons with Disabilities should be celebrated that differed from the views of both Indian and international disability activists who advocate for disability rights as manifested in programs, policies, and infrastructure aimed at increasing accessibility in all aspects of everyday life.1 To activists, accessibility means large-scale initiatives such as physically accessible infrastructure and transportation, equitable or preferential hiring practices, and nondiscrimination clauses in legislation, not individual aids and appliances. In contrast, Dr. Anup was celebrating a biotechnological and surgical intervention, in the form of a cochlear implant, on the first recipient, a carefully chosen two-and-a-half-year-old boy (also) named Anup. The Ministry of Social Justice and Empowerment had hoped to showcase “forward thinking” by first implanting a girl, but it failed to find an appropriate female candidate. The second recipient was a girl, who “now fights with her mother, an excellent outcome,” Dr. Anup told me. Anup, the first implantee, is “now going to school with the most normal speech, and the quality of the speech is just like us.” (I am apparently included in this “us.”)

A surgery to celebrate?2 A celebratory surgery? A surgical assertion of the state’s power?3 It was difficult to wrap my mind around the fact that the central government’s first cochlear implant surgery was performed on International Day of Persons with Disabilities. Dr. Anup was celebrating the Indian state’s ability to restore or repair a deaf child’s sense and make the child normal (in his words) through expensive foreign-made technology. This was an accomplishment that required the establishment of a cochlear implant infrastructure and ongoing acts of re/habilitation, maintenance, and repair. Lawrence Cohen (2004, 167) writes of surgery as a form of biopolitics: “We are awash in operations.” He offers the phrase “operable citizenship” to theorize the relationship between undergoing surgery and donating and receiving organs (172); one becomes a state subject through going under the knife. Here, surgery catalyzes both the potential of the deaf child and the present and potential network of the state and multinational cochlear implant corporations.

In this chapter, I analyze the state’s approach to disability, which has historically been based on distribution and entitlements. I take seriously that the distribution of aids, appliances, and pensions and the establishment of quotas in education and employment are no less important than the rights talk of disability rights activists. Scholarship on disability in India has largely focused on the contraction of the state as well as on the neoliberalization and privatization of disability-focused development.4 In contrast to this literature, I examine the expansion of a specific state disability program and argue that the central government’s cochlear implant program, and its pursuit of sensory normality for and on behalf of its citizens, reveals new directions for the Indian state in regard to engaging with disability and introduces novel assemblages of welfare, medicine, re/habilitation, and multinational capital.5 The move from mass aiding to individual implantation marks a transition for the state and the corporation, from a performatively distributed external relation to a performatively implanted inhabitant of the body. Cochlear implants are a concretization of a newfound technocratic approach to disability that focuses on the individual and not the mass body. Cochlear implantation renders both the state and the corporation indispensable in that they are literally and materially implanted in the body. Implantation becomes a mode of presence (Fanon [1967] 1994, 121). The state gets under the skin in a targeted and individualized way.6

The conditions of possibility for getting under the skin have been sedimented through India’s orientations and actions as a postcolonial state with a focus on population development and mass health. The Ministry of Social Justice and Empowerment enacts ideas of India as a developmental and welfare state in its distribution of aids, appliances, and pensions to people certified as disabled, and in its establishment of quotas for the education and employment of persons with disabilities.7 The Indian state’s orientation is an example of what Claire Laurier Decoteau (2013, 7) terms a “postcolonial paradox,” which “entails a simultaneous need to respect the demands of neoliberal capital in order to compete successfully on the world market and a responsibility to redress entrenched inequality, secure legitimacy from the poor, and forge a national imaginary.” Interventions are designed to make disabled individuals as productive as possible.8 Cochlear implants are particularly appealing in this respect because they can ostensibly produce children who are sensorially normal. They also function affectively and promote ideas of a caring and benevolent nation-state.

Anxiety lurks around the edges of care and benevolence. Nancy Hunt (2016, 6) stresses that “moods matter,” and I foreground anxiety as a mood here. According to the Oxford English Dictionary, anxiety is “worry over the future or about something with an uncertain outcome,” and to be anxious is to “experienc[e] worry or nervousness, typically about the future or something with an uncertain outcome.” Because cochlear implants come with uncertain outcomes, despite attempts to emphasize positive narratives and trajectories, they produce anxiety for all stakeholders. In addition, the complex dependencies that accompany cochlear implants introduce anxieties for all stakeholders, including the state, which must safeguard its substantial investment and materialize good outcomes, in the form of numbers of surgeries done and/or children’s functioning. The shift from aiding to implanting is not only a story of neoliberal development and the expansion of state power through partnerships with multinational corporations. It is also a story of an intervention that renders the state, corporations, surgeons, and families anxiously dependent: the state wants to claim that its (very expensive) program is a success, corporations need their implants to be deemed successful in producing good outcomes, surgeons aim to develop reputations as cochlear implant specialists, and families desire that their children listen and speak and also worry about maintaining the devices. These are all uncertain and contingent outcomes, despite the anxious confidence performed by the state, corporations, and surgeons. As I discuss below, there are, however, certain and finished outcomes, such as those documented in Guinness World Records.

What could be problematic about the state providing poor children with a missing sense? While medicine in India has been rife with scandal, cochlear implants are seemingly a win for everyone, including and especially the state. Instead of scandalous publicity, cochlear implants offer both ethical publicity and affective “feel-good” publicity (Cohen 1999; Sunder Rajan 2017). Government administrators such as Dr. Anup and others to be discussed in this chapter claim that the state is eliminating disability through cochlear implantation because implants enable deaf children to listen and speak. They stress that cochlear implants instill sensory normality, and after implantation deaf children no longer need to attend separate schools, learn sign language, or use interpreters or other accommodations. Their logic is that sensory normality leads to independence. (These claims also function as performances of sorts, and in many cases I had to make decisions about whether to go along with them or demur, as I do not agree that cochlear implants eliminate disability.)9

The ADIP scheme started in 1981 with a stated goal to “assist the needy disabled persons in procuring durable, sophisticated and scientifically manufactured, modern, standard aids and appliances to promote physical, social, psychological rehabilitation of Persons with Disabilities by reducing the effects of disabilities and at the same time enhance their economic potential. Assistive devices are given to PwDs [persons with disabilities] with an aim to improve their independent functioning, and to arrest the extent of disability and occurrence of secondary disability. The aids and appliances supplied under the Scheme must have due certification” (Government of India 2017, 2). This stress on “due certification” reminds me of a comment made by Dr. Anup. I asked him which companies the ADIP scheme was using for sourcing hearing aids, and he replied: “We don’t need a company, we need specifications.” He continued by saying, “Human beings have a specification. We are not Indian or American, we are human beings.” While I interpret this as a lofty statement about universal sensory needs and desires, in the case of cochlear implants, numerous people told me that the first set of specifications for the ADIP scheme was developed to privilege one manufacturer.10 Multinational corporations were never far from the cochlear implant scene, in contrast to the manufacturers of other disability aids and appliances. And as I discuss in chapter 4, in fact specifications are not universal, and the cochlear implant technologies to which children have access differ widely depending on where their families are located geographically.

Many disability aids and appliances are produced by the Artificial Limbs Manufacturing Corporation, known as ALIMCO, located in Kanpur, Uttar Pradesh. The Indian government has boasted that the company, which started production in 1976, is the largest manufacturer of aids and appliances in South Asia (Government of India 2015). The aids and appliances, which are grouped by disability category on ALIMCO’s website, are distributed through government agencies such as AYJNISHD and through nongovernmental organization partners. However, across class lines, disabled people routinely disparage the objects disseminated through the ADIP scheme, berating the clunky “one size fits all” wheelchairs with unsupportive seats and easily deflated tires, the heavy canes with insensitive tips, the rigid prosthetic limbs, and the nonindividualized hearing aids that always break.

In a report to the United Nations Committee on the Rights of Persons with Disabilities, an all-India coalition of disability NGOs and other organizations noted that aids and appliances are often sold for scrap metal (National CRPD Coalition–India 2019, 30). Middle- and upper-class disabled people have traditionally sought to purchase internationally produced aids and appliances, despite the heavy Goods and Services Tax placed on them. Disability activists have protested the levying of GST on disability-related objects, which they see as a particular form of cruelty. Cochlear implants are internationally manufactured and thus come with hefty GST. Indeed, in 2017, in an online petition directed to the prime minister, a mother of an implanted child wrote: “It’s not a luxury sir; it’s my Childs birth right to hear like any normal human being. Why should I be charged tax on a medical necessity?”11

In 2014, in response to negative perceptions and in a desire to technologically scale up under the “Make in India” campaign, the ADIP scheme began including “modern” and “technologically complicated” devices such as electric tricycles, smart canes, and digital hearing aids. The state also began planning to sell devices to neighboring and other developing countries. The Indian government’s 2015 report to the United Nations Committee on the Rights of Persons with Disabilities noted that artificial limbs had been distributed to Iraq, Haiti, Pakistan, and Zimbabwe (Government of India 2015). Also in 2014, following the establishment of state government cochlear implant programs in Kerala, Andhra Pradesh, and Tamil Nadu and in the Indian Armed Forces’ health services, cochlear implants were added to the ADIP portfolio for prelingual deaf children five years of age and below (exceptions are made for children up to six years of age) and postlingual children below the age of twelve who lost their hearing after the age of four or five. To be eligible, children cannot have additional disabilities.

To be eligible for a cochlear implant through the scheme, the child’s family must have monthly income below Rs 15,000 (US$198). Partial inclusion in the scheme is possible for families with income below Rs 30,000 (US$396) a month. The government purchases cochlear implants from one of four major manufacturers through a competitive bidding process in which the contract is awarded to the lowest bidder that meets specification requirements. The four manufacturers are based in different geographic locations: Cochlear is headquartered in Australia, MED-EL in Austria, Advanced Bionics in the United States, and Neurelec in France. With the exception of Neurelec, the companies all have headquarters in India and employ Indian audiologists and speech and language therapists. These professionals provide support to the state for developing newborn hearing screening and cochlear implant infrastructures around the country; they also often conduct training for surgeons and re/habilitation workers in both government and private institutions, including in locations outside metro areas. In addition, they create branded re/habilitation materials to be used by therapists and families alike and provide help with troubleshooting devices. Thus, these professionals support the state, surgeons, re/habilitation professionals, and implant recipients and their families.

The cochlear implant is by far the most expensive device distributed through the ADIP scheme. The total package costs Rs 6 lakhs (US$7,934) and covers implantation, the external processor (which has a two-year warranty), batteries and replacement cables and coils, and two years of re/habilitation at an empaneled institute or provider.12 By way of comparison, the second most expensive device under the scheme is an electric scooter that costs Rs 36,000 (US$476). According to ADIP guidelines, hearing aids for schoolgoing children can cost up to Rs 12,000 (US$157), while hearing aids for everyone else are covered up to Rs 10,000 (US$132), a significantly smaller financial investment than that for a cochlear implant. In addition, because it involves performance of a surgery, the cochlear implant is a distinct kind of distributional object.

Promoting Surgical Cultures and Large-Scale Implantation

After meeting Dr. Anup, I set out to learn how cochlear implants came to be included in the ADIP scheme. I interviewed Alok Sharma, a former joint secretary in the Ministry of Social Justice and Empowerment. Sharma is an Indian Administrative Service officer who is much respected by both the mainstream disability community and re/habilitation professionals for his ability to get things done. He now works as a personal assistant to a state minister and did not have much time to spend with me (scheduling our meeting involved many phone calls). Fielding calls all the while and speaking rapidly, with minimal pauses, Sharma efficiently and energetically told me that the ADIP scheme was revised when the ministry realized that new technology was available and that the current level of funding per beneficiary was very low. The ministry sought out stakeholder participation, including input from the All India Institute of Medical Sciences, AYJNISHD, cochlear implant surgeons, cochlear implant distributors, and the Ministry of Health (there was no participation from signing deaf individuals or groups). Sharma continued: “And based on this stakeholder participation, we found out that if we do large-scale cochlear implants within the country, then the process of implementation of the cochlear implants will become popular, the cost of cochlear implants will come down—because it would get government supported.” He stressed that bringing down implant prices was a service not just to India but to the world at large. He also said that as a result of “a transparent process using web-based platforms and application portals,” “large-scale” cochlear implantation is now happening in India. He summarized his work as follows:

We did three things. One, we brought down the prices of cochlear implants. We brought into India a culture of cochlear implants. We brought the culture of training the children, after the cochlear implants, with their parents. As well, we brought a culture of getting the doctors to do the surgery also. There are a large number of government hospitals which undertook the surgery. We empaneled the hospitals, we empaneled the doctors. All that also happened. So ultimately, it was an all-round process.

I discuss the “culture of training children and their parents” in chapters 2 and 3, but here I focus on “large-scale” implantation. The technology that Sharma emphasized—the purchase of expensive cochlear implants from multinational manufacturers, the use of web-based platforms, and the training of surgeons, audiologists, and speech and language therapists in the use of the latest technologies—represented a new frontier for the Ministry of Social Justice and Empowerment and the ADIP scheme in particular.

Sharma explained: “I feel that technology should be used in India. Our honorable prime minister has said that it all should be technology driven. And it should also be a make in India. I will be the happiest person if such instruments are made in India or maybe we find technology of our own which is cheaper, faster, better, and technologically more advanced.” Abdul Kalam, India’s former president and perhaps its best-known technocrat, spearheaded an initiative to develop an indigenous cochlear implant. Engineered by senior scientists at the Defense Research and Development Organization, the resulting implant is now in human trials. It will ideally cost one-fourth of the price of basic models currently on the market, although surgeons, audiologists, and speech and language therapists have professed skepticism about how it will measure up.13 Still, interest in this indigenous implant surfaces constantly in conversations as a form of techno-optimism that more directly interpellates the state and highlights the state’s desire to make cochlear implants available to all (The Hindu 2012). Both Sharma’s reference to “the honorable prime minister” and the development of an indigenous cochlear implant channel salvation-oriented and nationalist sentiments, in that not only would deafness be mitigated, but the implant responsible would be developed and manufactured in India; hearing would be an Indian-made sense.

As Sharma noted, private and public hospitals all over India have been empaneled (enrolled) in the program to perform cochlear implant surgery. Surgeons at these hospitals are mentored by more experienced surgeons who are sponsored by cochlear implant companies, the hospitals, or the state. Audiologists and speech and language therapists have also been empaneled. Through the ADIP program, a cochlear implant infrastructure has emerged that includes both public and private clinics.14 An audiologist in Chennai told me that before the ADIP program started, only very senior surgeons, audiologists, and speech and language therapists worked with implanted people, because at that time only a select number of wealthy people were implanted. With the emergence of government programs, however, the numbers of implanted people are increasing, and “everyone wants to be involved.” Performing cochlear implant surgeries and working with cochlear implant recipients are considered prestigious professions, in addition to the material and financial benefits they offer.

The ADIP scheme’s cochlear implant program has ushered in new technocratic processes through electronic platforms.15 Every application for an implant is uploaded onto a central government site along with the required paperwork, such as audiograms, CT scan results, medical reports, disability certification, Aadhaar number, proof of income, and birth certificate. The documents are then reviewed at AYJNISHD in Mumbai by a central committee made up of the institute director (formerly Dr. Anup); the heads of the psychology, audiology, education, and speech and language pathology departments; and two consulting surgeons specializing in otolaryngology (also known as ear, nose, and throat, or ENT, surgeons). The program coordinator told me that cases are reviewed carefully and in a timely manner. However, debates occasionally break out in committee meetings over whether someone should be implanted or not. These debates often happen in relation to children older than five years of age. While the official cutoff age is five, it can take families time to learn about the scheme, get their paperwork in order, and apply. Thus, a number of the cases reviewed involve children above the cutoff age, and many surgeons, re/habilitation workers, and implant company professionals find these cases problematic, because the chances of satisfactory outcomes are said to decline as the child’s age at implantation increases.

After someone is approved for a cochlear implant, he or she is placed on a waiting list, which—in the interest of transparency—is available for public viewing on the ADIP web portal. These waiting lists are also testament to the work of the scheme’s administrators and affiliated surgeons, audiologists, and re/habilitation workers around India, and AYJNISHD regularly updates the numbers of surgeries performed and the numbers of hospitals and therapists empaneled.16 As implants are delivered by the contracted companies, AYJNISHD slowly and incrementally sends them out to the empaneled surgeons and facilities. There is thus a question of what “large-scale” and “mass” mean in the context of such expensive distribution and surgical implantation. Despite the aspirations of Sharma and others, there is a limit on how many surgeries can be done and in how many bodies the state can materialize itself. There is also a limit on the nature and categories of relationships that can be formed, as discussed in the next section.

Recipients and Beneficiaries

In September 2018, after receiving permission from Dr. Anup to observe audiology and speech and language sessions in AYJNISHD’s cochlear implant wing, I sat with two audiologists and two audiology and speech and language pathology students as they saw a steady stream of children coming for implant mapping and therapy. The cochlear implant wing was separated from the rest of the institute by a series of doors and a long hallway (I wondered if this was deliberate). Despite posters on the walls proclaiming the government’s commitment to the latest high-technology interventions through the ADIP scheme, the wing still felt like part of a government institute. Names were entered into battered ledgers by hand, paper files were everywhere, therapy rooms were threadbare, and there were no fancy therapy toys in sight.

A mother and her son arrived without an appointment. They had taken an overnight train from Delhi because they suspected that the child’s implant processor was broken. An audiologist used proprietary computer software to check the processor and confirmed that it was indeed broken, but thankfully, it was still under warranty. She recommended that the mother and son visit the Cochlear headquarters in the Bandra Kurla Complex, which was five kilometers and a world away in a posh multinational office park; there, hopefully, they would either be given a new processor or be able to have the broken one repaired. I was struck that a government audiologist was sending people to a private corporation; this situation clearly revealed the entangled relationship between the two as well as the limits of what the state could do. Since that time, the practice of sending families directly to the corporation has been ended; instead, the families must engage with a middle person, a licensed supplier. Too many families were showing up, materializing, at the corporate headquarters.

Government officials and ADIP program administrators label people who have received implants through the scheme as “beneficiaries,” because, as an administrator told me, families “benefit” from the government program. At the same time, cochlear implant companies call implant users “recipients,” both in India and internationally.17 Unlike using the concept of “recipient” in reference to someone who receives a blood, tissue, or organ donation, labeling an implant user a “recipient” brings up questions about who the donor is and what forms of labor, transaction, and exchange are obscured. Implanted children and their families become both beneficiaries and recipients. Both terms, in foregrounding a (passive) gift relation, conceal that cochlear implants are paid for—by the state, by corporate social responsibility programs, or by private funding. Implants are purchased, not gifted, even if they are distributed as gifts through corporate social responsibility initiatives or through public relations events such as the celebration of a politician’s birthday. As noted above, the central government program provides two years of support for batteries and parts. After two years, the children and their families must directly approach cochlear implant companies for repair services and accessories. While some states—namely, Kerala and Tamil Nadu—offer long-term support with maintenance, the families of children who receive cochlear implants enter into relationships of complex dependencies on multinational corporations, which is ironic given that these implants are meant to index a nationalist process.18

The stakes of being a dual beneficiary and recipient of a cochlear implant are different from those of being a beneficiary of government programs that engage in ongoing distribution of Indian-made aids and appliances. The state (re)distributes objects as they wear down or need to be replaced—or if there is a photo opportunity, a politician’s birthday celebration, or an ordinary distribution camp scheduled. (Many of my deaf friends told me that hearing aids are given out “like candy” at such events.) In contrast, leading up to cochlear implant surgery and for two years following surgery, the state is present and materialized in the form of waiting lists, audit reports, and follow-up ledgers—but only for two years. Families return home after cochlear implant “switch-ons,” which typically take place in audiology offices, with state-provided bulky bags and boxes emblazoned with the logos of the cochlear implant companies (see chapter 4). At the behest of the state, they bring the corporations home with them.

Deviating from the typical “switch-on” procedure, which occurs in a clinic, in January 2021 Andhra Pradesh’s chief minister stood on a stage and appeared to personally activate the cochlear implants of small children who were recipients of his state government’s scheme: the state here not only implanted but also activated the sense.19 (I hope that some of the people surrounding the chief minister during the photo shoot were trained audiologists.) Implants materialize the state and multinational corporations at different points in time and in fraught ways.

While implant corporations benefit directly from sales of implants in the present, they also have perpetual and ongoing concerns about the future of implantation, a future that they need to secure by working in tandem with the state. These concerns map onto the following logic: “If outcomes are unsuccessful, if children do not start listening and speaking, both the state and the cochlear implant corporation look bad.” A senior director of a cochlear implant corporation told me that his company was investing in infrastructure for newborn hearing screening and training for speech and language therapists in India, a gift to the state.20 His logic was this: if the state and the corporation establish relationships with children at an early age and provide appropriate speech and language support, outcomes will improve; if outcomes improve, implants will look attractive and the market will grow. Implant corporations thus are dependent on their recipients’ outcomes, albeit not on the recipients themselves. Implant manufacturers in India and internationally hold workshops, trainings, and events for re/habilitation professionals, surgeons, and recipients in efforts to bolster outcomes. The state and cochlear implant corporations are simultaneously donors and recipients and are interdependent. The implanted children and their families, however, are dependent.

Some surgeons hold on to the idea of cochlear implantation as a gift and argue that cochlear implant surgery is “not a surgery from which to make money,” as a senior cochlear implant surgeon said at an annual conference held by the Cochlear Implant Group of India, or CIGI. Another surgeon brought this statement to my attention and told me that it annoyed him because he wondered if this meant that cochlear implants should only be given out as charity. If so, he continued, why are corporations profiting? Who should benefit financially from cochlear implants, and for whom is a cochlear implant a gift?

Cochlear implants were certainly a gift to and from India’s first cochlear implant surgeon. Dr. Daisy Fernandez performed her first cochlear implant surgery in 1987. Dr. Fernandez told me multiple times that not only was she the first Indian cochlear implant surgeon, but she was also the first female cochlear implant surgeon internationally. She traveled around India and the world performing implant surgeries, accompanied by international surgeons. The popular press lauded her tireless efforts to give deaf people the gift of sound.21 Because of her cochlear implant work, she was a recipient of the Padma Shri Award, one of the Indian government’s highest civilian honors. In her advanced age, Dr. Fernandez established a charitable foundation providing cochlear implants to children, and when I met with her in her hospital office, she was seeing a steady stream of potential implant recipients. She now provides implants out of charity and conviction.

Cochlear implant processors, batteries, cables, and cords are often distributed as gifts. In August 2019, I sat in an auditorium at a Tamil Nadu state health office in Chennai with small children and their parents, waiting for a rehearsal for a celebratory function to be held the next day. At this function, politicians would distribute implant parts such as batteries and coils, and, in a few rare cases, new implant processors. I sat with a young family who had traveled by overnight bus to Chennai. Their four-year-old son’s processor had fallen off during a scooter ride, and they were told that they would receive a new processor at the next day’s event. I also talked with a woman whose daughter’s implant battery had stopped charging. This particular distribution event was odd, because under the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme, accessories and parts for cochlear implants are supposedly covered, although there is not yet a structure in place to ensure that families’ needs are met efficiently. Families might wait months for parts or for processors to be repaired or replaced. Those at the rehearsal were waiting to receive something to which they were presumably entitled, but it was framed as a gift. Devices and parts, gift wrapped and distributed the day before a statewide election at a closed-door function, were material signs of the state’s investment in and care for its disabled citizens (as well as part of an attempt to influence the outcome of an election). Notably, this event involved a small and carefully chosen group of children and families, in contrast to the “mega camps” discussed in the next section.

From Camps to Surgically Implanting a Sense

As discussed above, most of the disability aids and appliances in India have historically been produced in the country itself and are distributed through the Ministry of Social Justice and Empowerment. AYJNISHD and its nodal organizations hold camps in order to reach as many disabled people as possible, particularly those in rural areas; at these camps, screenings are conducted and disability aids are distributed. In scholarly writing and the public imagination, medical camps in India are strongly associated with the mass sterilization that took place before and during the Emergency under Indira Gandhi: they are spaces where people’s capacities have been regulated or removed.22 Jacob Copeman (2009, 18) notes that despite historical associations of camps with forced sterilization, members of India’s lower classes see camps as opportunities for free medical treatment; camps also function as a “populist political instrument.” Immunizations, eye exams, blood donation, blood pressure checkups, and hearing tests, among other things, take place at camps. They are spaces of distribution—of disability objects, medicines, kitchen appliances, and food, for example. Religious organizations, civic bodies, medical organizations, politicians and political parties, and individuals wishing to celebrate something hold camps. The distinction between commodity and gift (Appadurai 1986, 11) is obscured at camps. Cohen (2011, 125) points out that camps are associated not only with “the immediate, punctuated time of present emergency” but also with “the periodic and regular time of the civil gift”; he notes that medical camps “presume a mass population that chronically lacks both access to and information about appropriate health resources and that depends on the gift of these resources through a form—the camp—able to treat the mass in its entirety.” Camps function both inside and outside everyday life, and they are a prime mode of engagement between the state and people, here specifically disabled people, albeit on different registers and scales. There are ordinary camps that do not receive much mention aside from brief notices in local newspapers and official government reports as well as so-called mega camps, which feature politicians or celebrities.

The state utilizes disability camps to demonstrate largesse and affection toward disabled populations through a form of engagement that I call “anonymous love,” building on Lisa Stevenson’s (2014) work on “anonymous care.” By “anonymous love,” I mean that disability has turned into an exceptional—even transcendent—category to be showered with affection and benevolence under the current government. This divine categorization resonates and articulates with Prime Minister Modi’s divine derivation of authority. In December 2015, on the occasion of International Day of Persons with Disabilities, Modi announced in one of his regular addresses on his radio program Mann Ki Baat: “We see a person’s disability with our eyes. But our interaction tells us the person has an extra power. Then I thought, in our country, instead of using the word viklang [disability], we should use the term divyang [a neologism that awkwardly translates to divinely abled or divine ability].” In renaming viklang as divyang, Modi has derived legitimacy and authority from postdevelopment and posthumanist channels. This focus on seeing and feeling disability differently functions as a form of governing through affect (Rudnyckyj 2011), which is why I call this anonymous love. Anonymous love sets the stage for spectacular bionic interventions such as cochlear implants, which, perhaps ironically, render deaf people normal and ordinary. Modi and the Bharatiya Janata Party, despite significant protest from disability activists, thus position disability as exceptional (Benton 2015) and above contentious politics, as well as above criticism and guidance from civil society and international bodies such as the United Nations.

Consider that in December 2019, Kashmir was under military occupation and significant violence was being inflicted on Kashmiri Muslims (both situations that continue today). Instead of, or in addition to, focusing on the state’s removal of sensory capacities through targeted blindings, the media covered cochlear implant surgeries and the creation of sensory capacities (United News of India 2019). I look at these occurrences of sensory removal and benefaction relationally to argue that the state instrumentalizes cochlear implant surgery to create positive public sentiment. Feeling good about disability (or divyangjan) and feeling good about the state go hand in hand. In addition to a sensory state, the state is trying to become an emotional state, a state of mind. We could consider implantation a form of state violence, what Eunjung Kim (2017) calls “curative violence.” While surgeons and the state approach cutting as a form of care (Plemons 2017), how are fantasies of capacitation directed at disabled people also a form of terror?23

Disability camps are crucial spaces for the performance of anonymous love through the ostensible capacitation of the body; such expansion exists in contrast to the forcible removal of capacities that took place at sterilization camps. In disability camps, disabled people are exceptional as a mass body to be intervened on through the performative distribution of objects and love. The performance is what is stressed, as in some cases disabled people receive empty gift-wrapped boxes, with the actual devices delivered only after the fact. Distributing objects demonstrates love and the materiality of state power. Through processes of enumeration—accountings of how many objects are distributed—disabled people are included in the nation. The people themselves are not counted, only the objects.24 Even in the case of cochlear implants, which are individualized, the state focuses on numbers.

Let us turn to one mega camp. The grandest (and most publicized) camps are held in Prime Minister Modi’s home state of Gujarat or in his constituency in Varanasi, Uttar Pradesh. These camps are often set up with a goal of breaking a record in relation to disability and getting the new record published in Guinness World Records.25 At the camp held for the prime minister’s 2016 birthday celebration, in Rajkot, Gujarat, three world records were broken: one for the largest number of disabled people lighting diyas, or oil lamps, simultaneously; one for the largest number of disabled people assembled to make a wheelchair logo or image, which said, “Happy Birthday PM”; and one for the most hearing aids disseminated in eight hours (Times News Network 2016). In addition to these record-setting events, which were heavily photographed and featured in the media, consider the discussion of numbers and other records broken in the following official Press Information Bureau (2017) release:

At Rajkot Camp aids and appliances to the tune of Rs.11.19 Cr. were distributed among 17589 divyang beneficiaries including 3000 beneficiaries who have received aids and appliances from the State Government amounting to Rs.1.53 Cr. So far it is the biggest camp in the history of the country in terms of the number of beneficiaries in a single camp for distribution of aids and appliances. Earlier similar mega camps involving the Prime Minister were conducted by the Department of Empowerment of Persons with Disabilities at Varanasi, Navsari & Vadodara in the year 2016 benefiting about 10000, 11,000 and 10,500 beneficiaries respectively.

During the event 90 motorized tricycles, 1960 tricycles, 1541 wheel chairs, 77 Cerebral Palsy (CP) chairs, 2896 crutches, 3095 walking sticks, 529 Braille cane, 112 rolators [sic], 162 Braille kits, 732 smart canes, 214 smart phone with screen reader, 68 daisy players, 20 ADL kits for leprosy cured, 2206 digital hearing aid, 1101 artificial limbs and callipers, 4416 TML kits and 73 laptops for person with intellectual disability were distributed among various classes of Divyangjan as per their need. The State Government on their own also distributed devices for rehabilitation and empowerment of persons with disabilities to 3000 divyangjans.

Two Guinness World Records were created in connection with the event. On 28th June 2017 a Guinness Book of World Record was created in the category of highest ever participation of 1442 persons with hearing impairment in a sign language lesson at a single venue while performing our National Anthem. Previously, such a record was hold by Taiwan (China) with participation of 978 persons with hearing impairment. The participants of this historic record repeated their performance in front of the Hon’ble Prime Minister today. Second Guinness World Record was created in the category of highest number of Orthosis (Calipers) fitted to 781 mobility impaired persons on a single day.

In addition to the above two Guinness Book of World records, another new “World Book Record” has also been created in the category of World’s Largest Disbursement of Aids and Appliances for Persons with Disabilities (Divyangjan) at a single venue in one day involving 17589 persons with disabilities (Divyangjan).

These numbers, captured for posterity or until the records are broken, do not capture the long wait times, boredom, and hunger that participants experience while waiting for politicians and other benefactors to arrive at camps, nor do they reveal that in many cases, the objects distributed at camps are inappropriate or ill fitting. Children are given adult wheelchairs in which they cannot safely sit (they sink into oversized demonstrations of state largesse), and hearing aids are distributed without being programmed to meet the children’s specific audiograms.26 These objects are often ultimately sold, disposed of, or repurposed as scrap metal. (In contrast to these objects, cochlear implants are surgically implanted devices that cannot be discarded.)

The administration keeps close tabs on the number of distributed objects as evidence of its commitment to disabled people. An Indian Sign Language interpreter who regularly interprets for Ministry of Social Justice and Empowerment functions told me that it is easy to interpret at these events. Officials’ speeches usually consist of an overview of how many aids and appliances have been distributed, how many ISL interpreters have been trained, and how many words are now included in the ISL dictionary; the only thing that changes is the numbers. Occasionally, however, there are mishaps, such as when Minister of Social Justice and Empowerment Shri Chand Gehlot announced during a speech: “1700 visually impaired children have been treated with Cochlear Implant Surgery and almost all of them are now leading a normal life” (Press Information Bureau 2019).27 According to government logic, disability categories can be intermixed and intermingled, as, after all, all disabled people are divyangjan, or divinely abled people. What is important here is the number 1,700, which actually refers to the cochlear implants and not the children, and the unmarked category of divyangjan. This is a form of governmentality that attaches to objects and not to individuals or communities (see Gupta 2012).

Numbers versus Outcomes

An anxious matter of concern: Is implantation the desired outcome in and of itself? How is an implanted sense quantified and qualified? Different stakeholders negotiate what a cochlear implant outcome is and should be, and there is much talk about outcomes as an unspecified category. Stressing the importance of outcomes as something other than the number of implant surgeries done is also a way of distinguishing oneself from and critiquing others who focus on numbers as outcomes. In October 2019, I met with a senior administrator implementing the ADIP cochlear implant program. A former special educator, he anxiously commented that upper-level administration officials were breathing down his neck and demanding to know why more cochlear implant surgeries were not being performed. These officials told him that in previous years, the number of surgeries performed had been greater. He said that these officials treated cochlear implantation like a “mela [festival] or camp.”

When I asked how many surgeries had been done, he asked an assistant to bring him a memo containing this information, and then, dramatically switching tone to a more official register, he read out: “This year until October 2019, we have performed 266 surgeries under the ADIP scheme and 31 surgeries using corporate social responsibility funds. 297 surgeries have thus been done since October 5th. 121 children are waiting for surgeries. 291 are waiting for approval. 309 have incomplete applications.”28 The administrator stressed that because he had been a special educator, he cared about outcomes, and not the numbers of surgeries performed—although he did not elaborate on what he meant by outcomes. Unlike other state actors who saw implanted children, typically carefully chosen star cases, only at melas, he engaged with families and actually saw cochlear implants in action. He was anxious about the state’s anxiety about numbers.

Cochlear implant surgeons are also concerned with numbers, often for reasons similar to the state’s, in that doing more surgeries bolsters their legitimacy, prestige, and appeal. During interviews and informal meetings, surgeons often immediately announced to me how many surgeries they had performed. It is also the norm for them to showcase their numbers of surgeries when they make conference presentations to other surgeons and cochlear implant industry stakeholders. One surgeon pointed out that for the surgical community, “it is a numbers game” in which surgeries are performed and then performatively discussed. Another surgeon told me that many surgeons say “right and left how many implants they have done. So and so says: ‘I have done 1,000 implants, I have done 500 implants,’ and so on, but they are not talking about outcomes.” She added, “Show me one of these 1,000 children with implants who talks!” This surgeon specifically wanted “outcomes and not numbers.” Echoing cochlear implant corporation concerns, she commented that “people are going to stop trusting the technology because they’re only going to see poor outcomes.” She then critiqued the ADIP scheme for its singular focus on numbers and said that the government does not “take care with the rehabilitation process”—an important critique that I return to in chapter 4. I was struck by the almost universal scorn and derision toward the central government program among the attendees of the 2019 CIGI conference, the majority of whom were from the private sector. It was fashionable to critique the program’s failure to provide re/habilitation and replacement parts postsurgery. However, the ADIP program enabled many surgeons to become cochlear implant surgeons and created an implant infrastructure in India; the scheme rendered discussions about outcomes possible.

The flashpoints in discussions around outcomes are age of implantation and re/habilitation pathways. Surgeons, audiologists, and speech and language pathologists complained that the ADIP program allowed children up to six years of age to be implanted. In contrast, they pointed out, the Kerala state program covers children only up to age three, which is why outcomes in that state are so good. However, at the same time, both government and private surgeons are eager to do cochlear implant surgeries and to increase the numbers of surgeries performed. One surgeon told me, “Everybody wants to jump on the cochlear implant train.” Surgeons’ desires for higher numbers are also motivated by their wish to develop relationships with implant manufacturers; the more implant surgeries they do, the greater the incentives they receive from companies in terms of financial rewards, training, and opportunities to be mentor surgeons. Manufacturers do not provide implants to a surgeon until he or she has performed a set number of surgeries under a mentor surgeon (surgeons are thus also benefactors to each other). After demonstrating competence, a surgeon can obtain implants directly from the companies; the prices that surgeons pay for implants are not publicly available, and there is much speculation about distribution networks and how much of a markup exists (Nagarajan 2017a).

Further complicating the idea of a finished or final outcome, cochlear implantation challenges the logic of “camp time,” “surgical time,” and “project time” in that auditory performance will ebb and flow over an implantee’s lifetime, depending on mapping, re/habilitation, and cochlear implant maintenance.29 There are surgeons who perform outsize and long-term roles in their patients’ lives. Relationships are another kind of outcome and a reminder that critiques of medicine need to be nuanced. Dr. Meenu Parel, a Pune-based surgeon, stood up at the 2018 CIGI conference and proclaimed that surgeons who perform cochlear implant surgery are responsible for their patients for life. At the CIGI conference the following year, Dr. Parel talked about the importance of long-term planning for cochlear implant patients, including plans for handing over their care as a surgeon ages and retires from practice. Dr. Parel monitors her patients’ therapy sessions, and patients return to her clinic for processor repairs, accessories, and upgrades; at her outpatient department meetings, one can often find families who have returned to ask about replacement parts or processors as well as for more general life advice. Dr. Parel established a cochlear implant team consisting of speech and language therapists, audiologists, and a social worker at a Pune hospital. She stresses the importance of comprehensive care over the long term. “Care” here means many different things—care during surgery, care for the re/habilitation process and outcomes, care of the device, and care for the child and the family.

While the political and financial outcomes associated with cochlear implants might be clear(er), experts have not decided what constitutes a successful outcome for a child beyond the generic “The child will talk.” At the 2019 CIGI conference, one of India’s leading audiologists interrogated a panel of other audiologists about how they evaluate outcomes. She asked what measures they used, specifically mentioning the Meaningful Auditory Integration Scale, the Speech Intelligibility Rating Scale, the Categories of Auditory Perception Scale, and the Parents’ Evaluation of Aural/Oral Performance of Children.30 These measures depend on parent accounts or test listening skills and speech production, usually in soundproof settings, and ignore the role of context and the diverse settings in which children find themselves. Pisoni et al. (2008, 54) note that because “the field of clinical audiology is an applied science drawing knowledge and methods from several different disciplines, no common integrated theoretical framework motivates the choice of specific outcome measures and tests, interprets the results and findings, provides explanations, or makes predictions.” I saw this lack of a dominant framework on display at the CIGI conference as different audiologists and therapists discussed the varied outcome measures they used. There was, and is, an avalanche of (talk about) outcomes (Hacking 1982). (Families often choose surgeons, audiologists, and speech and language therapists based on these professionals’ advertised outcomes, and surgeons, audiologists, and speech and language therapists often compare their outcomes and speak negatively about the outcomes of their peers.)

There is also the long-term and population-level outcome that government officials and surgeons speak of: “eradicating deafness,” in their words. This outcome, of course, depends on the success of the individual-level outcomes discussed above, albeit over the long term. (Medical and audiology research studies about cochlear implant outcomes in India generally have not looked beyond a period of two years postimplantation, and the ADIP scheme does not have a mechanism for maintaining contact with implant beneficiaries beyond the two-year period after implantation, if even that.) In an interview, a surgeon responsible for starting a state cochlear implant program told me that since cochlear implantation now exists, the state could conduct newborn hearing screening in earnest to identify deafness as early as possible. He said: “We can do that now because we have a cochlear implant program. Otherwise it would be criminal, you know, picking up a child and not doing anything about it.” (He did not consider hearing aids or teaching a child and family sign language to be “doing anything.”) This surgeon insisted that his state would become “deafness-free” by the year 2025, meaning that deafness would be corrected in those born deaf. He stressed too that categories of targeted recipients were expanding, and he had set his sights on older postlingual deaf people: “So here is a situation in which we have a solution in our hand, and then we are looking for the problem.”

As 2025 was fast approaching (six years from the time of our interview), I wondered exactly when this surgeon thought deafness would be eradicated. Would this happen at the time of implantation (which is what government accounting privileges, with its focus on numbers of implants performed) or would it be post-re/habilitation? And when would re/habilitation actually be completed? Some families finish their allotted two years of therapy under the ADIP scheme and cannot afford additional therapy; other families live too far from therapy centers to receive regular therapy at all. A well-respected auditory verbal therapist in Delhi told me about ending a child’s therapy sessions because the child was listening and speaking at age level and no longer needed therapy; she declared this child a successful outcome. However, surgeons and other therapists commented that such success is difficult to maintain: a drop in performance often takes place once children enter higher grades of study and language becomes more complex. Outcomes are never concretized and always need to be maintained.

Surgeons and other professionals sometimes take unexpected turns to adjust or remedy poor outcomes. Dr. Praswant Bal is a savvy foreign-educated Bangalore-based surgeon who performed surgery on older children who did not become listeners or spoken language users. He did this both through the private market and with NGO funding. In order to rescue his outcomes, and perhaps his reputation, Dr. Bal created an app for mobile devices that allows deaf children to learn sounds (not language) by seeing immediate feedback on their production. Children using the app look at the screen and practice pronouncing “ma,” “ta,” “pa,” and other sounds, and the app tells them if and when they are vocalizing these sounds properly. According to the app’s brochure, the premise is that if the brain receives sound in a visual format, then it is able to develop “near normal speech.” The brochure claims that in trials, “completely deaf and mute persons” have learned to utter eight sounds in a matter of weeks.

Dr. Bal’s project has since been funded by the central government: it fulfills the state’s desire for innovative and technological projects that utilize existing infrastructure and are “make in India.” A state government was excited about the project and permitted a pilot in deaf schools in the state, in which the children used instruction time to practice uttering sounds. According to Dr. Bal, officials in the state’s Ministry of Social Justice felt that hearing aids (as distributed through government programs) were not successful for obtaining good listening and spoken language outcomes, and they were interested in whether his app could maximize outcomes. This brings up questions about what it might mean to privilege the production of sounds over learning language and subject content—perhaps in Indian Sign Language.

Dr. Bal was uninterested in ISL, insisting that it could not be used to communicate effectively in the world. He was also unconcerned about a deaf school using instructional time to teach sounds instead of language or academic content. He instead focused on feedback from parents who were ecstatic that their deaf children were uttering the sounds “Ma” and “Pa,” and termed the first time that parents heard such sounds “switch-on moments.” His use of this phrase brings to mind well-circulated “switch-on moment” videos of cochlear implants being activated, although in such videos we ostensibly see deaf children hearing (and not speaking) for the first time. What is switched on or activated in these moments of uttering sounds, and for whom? Dr. Bal seamlessly remade himself as a technology entrepreneur and easily received funding—for an app that teaches deaf children how to utter sounds. (If only it were that easy for deaf people to obtain funding and choose new paths.)

Camp, Surgery, Re/habilitation, Relationships: Building an Infrastructure

To further examine the relationships among surgeons, corporations, and the state, I turn to the experiences of Dr. Reetu Murthy, a surgeon in Bangalore who was previously a faculty member at a medical college focusing on routine otolaryngology care. I discuss Dr. Murthy’s experience at length because her zeal for cochlear implant surgery and her close relationship with the state are both remarkable and ordinary. After Dr. Murthy first observed cochlear implant surgery performed around 2013 at her medical college, she left her job and devoted herself to developing a cochlear implant practice. She saw her practice as remedying the work of other intervention programs—namely, hearing aid distribution programs—that failed to benefit deaf children. Dr. Murthy’s efforts overlapped temporally with the rollout of the ADIP program, and she performed the first ADIP surgery in Karnataka, where she was also instrumental in setting up a state cochlear implant scheme.

In a meeting in her sunlit and cheerful clinic featuring a playground in the lobby and colorful posters from cochlear implant companies, Dr. Murthy told me that she initially thought cochlear implant surgery could be performed only by very senior surgeons. However, after encouragement from a senior cochlear implant surgeon who agreed to mentor her, she resigned from her position at the medical college and opened a private practice with a re/habilitation team consisting of an audiologist and a speech and language pathologist. She saw what implants could do, and, because she “needed patients and needed implants,” she commenced a mission to “mobilize patients.” Accompanied by an audiologist, she visited deaf schools in Bangalore, hoping to give presentations about cochlear implants to the students’ parents, but the schools would not allow her to do so, or, if they did, the parents did not come. She also visited different institutes in Bangalore and Mysore, where she was met with suspicion and resistance.

Dr. Murthy was finally able to do a few surgeries: one patient was a recently married man who used his dowry payment to cover part of the costs, with his employer and a loan paying for the rest; another was the child of a cook, for whose surgery Dr. Murthy sought funding from the Prime Minister’s National Relief Fund. She also implanted the child of a nurse who had assisted her with an earlier cochlear implant surgery. When Dr. Murthy visited this child’s school, she observed that all of the students were wearing “useless” hearing aids distributed by an NGO. She told me that hearing aids are distributed, they break, and then they are distributed again. This cycle, she stressed, is financially wasteful as well as unhelpful to children.

Dr. Murthy became adept at seeking out funding through government programs and private donors, notably through corporate social responsibility initiatives and the Prime Minister’s Fund. At this point, the ADIP scheme began, and Dr. Murthy became frustrated because she was not getting patients, even though she had raised funds and implants had become free for certain populations. Finally, she went to the state health minister and showed him a video of an implanted child who could listen and talk. She related their conversation to me:

“Sir we want to do a camp with the government in a rural place. If there is a camp in the government’s name, people will trust it. If I say, I’m doing [a] camp and I am going to operate and give [a] free implant, parents may not trust me. So let us do it through the government.” He said, “Sure, but you will have to do it in my constituency because I know the people and how to get the work done.” I said, “Okay.” This was the first time I heard the name of his constituency. . . . We said, “Theek hain” [okay].

The health minister’s insistence that the camp be held in his constituency points to the political nature of camps and disability distribution processes in general. Dr. Murthy organized the camp at a primary health center in the health minister’s constituency, which was no easy logistical task. She had to arrange for CT scans and MRIs in addition to hearing tests, and she knew she had to ensure that all needed tests could be performed in one day, so that children would not be lost to follow-up. She reached out to medical colleges with the health minister’s assistance and acquired full teams of anesthesiologists and radiologists. She gave detailed instructions about the specific images she wanted from the radiologists; as she told me, “Why waste time and resources to do a full MRI and CT?” The minister also offered the help of Anganwadi and Asha (community child-care and health) workers who would transport children to and from the camp and ensure the presence of two hundred to three hundred children. Dr. Murthy called on her senior mentor to accompany and support her.

On the day of the camp, a routine was established. First, each child had a basic audiology exam. If hearing loss was suspected, the child was sedated and underwent a brain-stem evoked response audiometry test. If hearing loss was diagnosed, the child underwent an MRI followed by a CT scan. After these tests, the child recovered for an hour and was sent home. In a day, Dr. Murthy’s team found forty children eligible for implants through the ADIP scheme. (They also found other children and adults with hearing loss who were ineligible because of age requirements; they were sent for hearing aids.) In discussing the uniqueness of her camp and its deviation from typical camps, Dr. Murthy pointed out that there was a “food issue”: the children and their families expected food, since it was a government camp and many had come from far away. However, sedated children cannot eat, and so food was not distributed, only the possibility of a cochlear implant. This tension in the structure of the distributive process, between food now or expensive biotechnology later, reveals the novelty of cochlear implants in that they are not distributed in the moment, in the current structure of the camp. Camp space and time are stretched.

Dr. Murthy’s team remained in this rural setting for three days because they were afraid to lose these hard-found children to follow-up. In describing her thinking at the time, again Dr. Murthy stressed: “Since it was through the government, on that scale, people will trust you. They didn’t think that we were doing something wrong or anything.” The day after the testing battery, the team called all of the eligible parents to ask them to attend a counseling session about cochlear implants and to request their signatures. The families were told that the surgery would take place at a government hospital in Bangalore. Dr. Murthy then uploaded the forty files into the ADIP system for approval by the AYJNISHD central committee. As she said: “We did the camp for the poor children. Nobody was ready to go anywhere and do camps. They were sitting in their places and taking all the rich patients. We went to the rural place, we did the camp. We picked these children up from the grassroot level.” While Dr. Murthy’s comments might seem self-righteous, that she personally recruited patients through rural camps is noteworthy, although many of the audiologists and audiology students I spoke with discussed their participation in camps with excitement and a sense of adventure; they saw such camps as opportunities to seek out patients as opposed to waiting for them to arrive on their own.

Dr. Murthy received one of the first batches of implants through the ADIP scheme, twenty-five in total. Since she was no longer affiliated with a government hospital, she was given an honorary appointment at a Bangalore government hospital so that she could perform the surgeries. This was much to the annoyance of some hospital employees, who felt that she was encroaching on their territory, although Dr. Murthy eventually became a mentor to a surgeon at this hospital. She told me that the hospital staff was resentful of her ability to commandeer resources and rooms, but she remained unfazed. As she described her attitude to me: “Nothing doing, the government has given me twenty-five implants and I need to finish these in one month so that I can get more. The more I finish, the more implants I get, and the more children who get implants.” Patients were given travel fare to Bangalore, and Dr. Murthy and her mentor surgeon took over two operating theaters and operated side by side, doing six implants a day, until they had done all twenty-five. Dr. Murthy was worried about operation failures, because it would take only one to derail her practice; she thus took “special care” with these first implant cases.

The children were discharged a day after their surgeries. Activation took place three weeks later in Mangalore, close to the health minister’s constituency and an overnight bus ride from Bangalore. Dr. Murthy and her team subsequently traveled to Mangalore every month to conduct follow-up care, mapping, and therapy. However, problems arose: they were in Mangalore for only one day each month, few qualified staff were available there, and the central government took a long time to pay for services. Dr. Murthy returned to the health minister and asked for a Karnataka state scheme. The minister was sympathetic and told her to write a scheme, which she did, using funds from the National Health Ministry’s Rashtriya Bal Swasthya Karyakram program, which focuses on early detection and screening for health problems and disabilities in children, to create the Shravanadosha Mukta Karnataka (Deafness-Free Karnataka) program. The Karnataka program mirrored the ADIP scheme, except that the cutoff age for implantation was six years, and the program covered travel fare to and from surgical and re/habilitation centers as well as lost wages.31

Dr. Murthy found an ally in the health minister. Similar to other surgeons I interviewed, she stressed the role of interpersonal connections and the work of individual government bureaucrats who appreciated the impact of cochlear implants, like Joint Secretary Sharma discussed above. Dr. Murthy’s extensive endeavors to find potential government beneficiaries and implant recipients through visiting schools and other institutions, setting up a camp, and even writing a new government scheme shed light on the difficulty of accomplishing what Sharma calls “large-scale” implantation and demonstrate that cochlear implant distribution processes and infrastructure are quite complex, contingent, and precarious. Dr. Murthy currently has a thriving private clinic and is taking increasingly fewer ADIP-funded cases. She also has a more expansive view of success and outcomes, in that she is implanting children with multiple disabilities as well as older children—two populations whose precarious outcomes might bring down the reputation of implants, as I often heard in my research.

What a difference timing and the proliferation of cochlear implants make. While Dr. Murthy’s early experience as a pioneering surgeon involved actively seeking out patients, my discussions with audiologists and speech and language therapists at government institutes in Delhi and Mumbai about the current state of the ADIP scheme reveal different and more ambivalent trajectories. Between working with a steady stream of families and overseeing student practitioners, state-employed audiologists and speech and language therapists told me that they feel powerless in relation to families requesting implants through the ADIP scheme. Families assert that it is their right to apply for the scheme, making statements such as “Government is providing this scheme for people like me,” “Government is doing this for us,” and “I am eligible for the scheme.” Families often insist on forgoing hearing aid trials in favor of cochlear implant surgery as soon as possible (perhaps because they are aware that hearing aids provided by the government are a significant step down from cochlear implants and/or because they have read or seen positive media coverage of cochlear implants). As one audiologist stressed: “We cannot say no to people for implants because it is a government scheme that they are entitled to. We are a government office, and if we refuse to give someone an implant, they can file a complaint against us or accuse us of looking for bribes.” To put it briefly: “We are government, we cannot say no.” What else, besides yes or no, could be said here?

In this chapter, I have traced how the state produces presence and materializes itself as a welfare state through the ongoing distribution of disability aids and appliances. In contrast to previous forms of distribution, the distribution of cochlear implants has resulted in the state venturing inside the body and acting on and in individuals in targeted ways. The state becomes a sensory state in its attempts to produce sensory normality. Cochlear implants ostensibly produce capacities and make children normal. In addition to becoming beneficiaries, children who receive cochlear implants become recipients, a category and relationship that they and their families are initially unaware of entering into. In the process, cochlear implant manufacturers become providers of state infrastructure, and surgeons become cochlear implant surgeons. Cochlear implants also offer new possibilities for government administrators, surgeons, re/habilitation workers, and families to reinvent themselves, although this reinvention is fraught, produces anxiety, and involves complex dependencies in which all stakeholders are potentially imbricated.

The question of what could be problematic about the state providing poor children with a missing sense takes on a more ambivalent valence when one considers these complex dependencies and the unfinished nature of implantation, contrary to what government administrators, cochlear implant corporations, and some surgeons insist. In the following two chapters, I focus on what happens after surgery. I argue that implantation is only the beginning, and that becoming normal through cochlear implants, despite state discourse, is an anxious, long-term project that lasts a lifetime and produces multiple unknown outcomes along the way.