Beyond the Camp and the Surgery: Cochlear Implants and Complex Dependencies in India

Introduction: Cochlear Implants to Celebrate International Disability Day?

Dr Anup ¹ is the former director of the Ali Yavar Jung National Institute of Speech and Hearing Disorders (AYJNISHD) in Mumbai, India. 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 organisation 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 (ISL); performs hearing screenings and early intervention; conducts research on early intervention, speech and language pathology, audiology and special education; and coordinates and distributes aids and appliances such as hearing aids and now cochlear implants. ² The preceding discussion took place in Dr Anup’s large and comfortable office in September 2018.

I had met Dr Anup in order to learn more about the central government scheme Assistance to Disabled Persons for the Purchase/Fitting of Aids/Appliances (ADIP), which since 2014 has included cochlear implants. I tried to stick to (and get through) my logistical questions, but Dr Anup had other ideas, as we can see in the exchange above. He particularly wanted to stress that India’s first central government–sponsored cochlear implant surgery happened on 3 December 2014, which is the United Nations–sponsored International Day of Persons with Disabilities. 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 Ministry of Social Justice and Empowerment’s work.

A surgery to celebrate? ³ A celebratory surgery? A surgical assertion of the state’s power? ⁴ Dr Anup had a different view of how the International Day of Persons with Disabilities should be celebrated from that of both Indian and international disability activists who ask for disability rights and accessible programmes, policies and infrastructure. ⁵ Instead of the celebratory artistic, cultural or dance programmes typically held on this day, he was felicitating a biomedical ‘fix’ (Benjamin, 2019, p. 137) in the form of a cochlear implant, on the first recipient, a carefully chosen two-and-a-half-year-old boy, (also) named Anup. ⁶ He was also celebrating the state’s ability to restore or repair a deaf child’s sense through expensive foreign-made technology, a biopolitical and biocapitalist (Sunder Rajan, 2006) accomplishment that targets specific kinds of deaf children and requires the establishment of a cochlear implant infrastructure and ongoing acts of re/habilitation, maintenance and repair.

A cochlear implant is a surgically implanted electrode array that wraps around the cochlea. ⁷ It is stimulated with an external processor that sits behind the ear or directly on the head and attaches to the electrode array via a magnet. While the internal component is implanted, the external processor, like a hearing aid, requires batteries and must be maintained and serviced. Processors also become obsolete after a certain amount of time and are no longer supported by corporations. Upon activation a few weeks post-surgery, processors need to be individually mapped (programmed) at regular intervals by a qualified audiologist with access to proprietary software. After mapping, implant users require language therapy to learn how to hear and process what they are hearing. There are three major cochlear implant manufacturers: Cochlear (headquartered in Australia), Med-El (Austria) and Advanced Bionics (the United States of America). These companies have significant presence in India with teams of audiologists and rehabilitation therapists, and they provide support for developing cochlear implant infrastructures around the country, travelling to second- and third-tier cities and providing training for surgeons and rehabilitation workers alike.

I draw from interviews with diverse stakeholders including government administrators, disability activists, cochlear implant corporate representatives, families, surgeons, audiologists, and speech and language therapists conducted between 2016 and 2020 to analyse the ways that the state intervenes on disability. As I focus on the top-down logics and processes involved in state intervention, by design I do not foreground the experiences of cochlear implant users or their families until the conclusion (but see Friedner, 2022). While disability studies and research on disability in general are rich and growing fields, most scholarship has documented India’s vibrant urban-based cross-disability rights movements (Bhambani, 2004; Friedner et al., 2018; Mehrotra, 2011), critiqued neoliberal governmental and non-governmental programmes (Chaudhry, 2015; Friedner, 2017; Hiranandani & Sonpal, 2010) or looked at familial practices of care (Addlakha, 2020; Ghosh & Banerjee, 2017; Vaidya, 2015). In this article, I critically analyse the state’s approach to disability, which is largely engagement through distribution and entitlement. I take seriously that distribution and entitlements are no less important than the ‘rights talk’ of disability rights activists.

I argue that the central government’s cochlear implant programme reveals new directions in which the state is moving with regard to engaging with disability and introduces novel assemblages of welfare, medicine, rehabilitation and multi-national capital. In these assemblages, new relationships form between the state, multinational corporations and families with deaf children. These relationships stretch beyond the one-time disability camp or the one-off surgery and have resulted in opportunities for government administrators, surgeons and rehabilitation professionals to reinvent themselves in relation to the seemingly miraculous power of cochlear implants; in particular, cochlear implants allow the Ministry of Social Justice and Empowerment entry into the realms of biology, medicine and the body.

The disabled body offers the state and corporations rehabilitative refuge in that disability is seen as an apolitical, unproblematic and ‘feel-good’ space in which to intervene (Friedner, 2017). Cochlear implants thus render both the state and corporation indispensable; both are literally and materially implanted in the body, and implanted children and their families must negotiate interactions with both simultaneously and at different points in time. While the government pays for the initial surgery, implant processor and needed cables, coils and batteries, it only provides these things for two years. After two years, the state removes itself and families and children are required to purchase spare parts and eventual upgrades directly from cochlear implant corporations. Families and children thus enter into long-term relations of hidden risk, harm and material entanglements. What I mean by this, in addition to the fact that there is always the possibility of a surgery going awry and an implant not being beneficial, is that there is always the risk that a family will not be able to afford to maintain the implant. If this happens, a child will then cease to use their cochlear implant, leaving them without a consistent and developed way of interacting with the world socially, educationally and economically. ⁸

Government administrators throughout my research told me that after surgery, deaf children ‘become’ normal or near-normal and do not need additional support. I took their words, like those of Dr Anup, as performances of state largesse. Specifically, I saw them as nationalist and technophilic comments reflective of current BJP government talking points about the way that it provides for the nation while also ignoring the forms of social and economic suffering it produces. In response, I had to decide whether to nod my head politely or to share examples from my research of children who still struggled to hear or could not hear at all and families that were anxious about purchasing new parts or a new processor. ⁹ The move from aiding to implantation marks a transition from the state and the corporation as a detachable (and ritually mass-distributed) relation to an actual inhabitant of the body, albeit an ambivalent one in that there is still the external component that must be maintained and serves as a reminder of the messiness of biocapitalist entanglements.

These new relationships between the state, multinational corporations and surgeons—and the way they interpolate families directly into these relations as well—have led to the development of novel forms of infrastructure, rehabilitation trajectories, accounting processes and, ultimately, new ways of understanding welfare and distribution in India that are increasingly medicalised, specialised and imbricated in biocapitalistic networks. As Sunder Rajan (2006, p. 3) reminds us: ‘[b]iotechnology is a form of enterprise inextricable from contemporary capitalism’. At stake is also a question of ‘value’, which as Sunder Rajan (2006, p. 19) argues ‘is a double-jointed word that not only implies material valuation by the market but also suggests a concern with meanings and practices of ethics’.

Ethics is important in that while biotechnology—and medicine more generally—in India have been rife with scandal (Sunder Rajan, 2017), the idea of implanting a small deaf child is not questioned by the public, families and others (although it is heavily criticised by Indian deaf activists). The barrage of popular media reporting around implantation has been filled with inspiring and heart-warming stories of once-deaf children who can now hear (Murthy, 2019). As Cohen (1999, p. 146) emphasises: ‘Ethics has become the dominant mode of public conversation around emergent biosocial situations’. Cochlear implants are seen as above ethical reproach, a win for everyone, including and especially for the state. Instead of scandalous publicity, cochlear implants offer both ethical publicity and an affective ‘feel good’ publicity (Cohen, 1999; Sunder Rajan, 2017). After all, what could be problematic about the state providing poor children with a missing sense?

State-provided Disability Benefits

The ADIP scheme started in 1981, and its stated goal is 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. (Government of India, 2005)

AYJNISHD’s (2018) annual report states:

a wheelchair, an artificial limb, crutch, a brace, a splint can greatly improve the mobility of physically disabled individual. Similarly, with the help of modern hearing aids, persons with residual hearing can be helped to carry on many activities of daily living. Cochlear Implants provide opportunity to persons with hearing disability to hear and learn to speak. (p. 35)

In this statement, the government’s commitment to materially engaging with disability is foregrounded as is its sense that disability can be mitigated through (individually and mass-distributed) aids and appliances.

Many of these aids and appliances are produced by the Artificial Limbs Manufacturing Corporation (ALIMCO), in Kanpur, Uttar Pradesh, which the Indian government stresses is the largest aids and appliances manufacturer in South Asia (Government of India, 2015). Aids and appliances are grouped by disability category on ALIMCO’s website, and they are distributed through government agencies and non-governmental organisation partners. Things disseminated through the ADIP scheme are routinely disparaged by many disabled people (across class) who berate the clunky ‘one-size-fits-all’ wheelchairs with unsupportive seats and easily deflated tyres, heavy canes with insensitive tips and non-individualised hearing aids that always break, as examples. In a report to the United Nations Committee on the Rights of Persons with Disabilities, an All-India coalition of disability NGOs and organisations noted that aids and appliances are often sold for scrap metal (National-CRPD Coalition India, 2019). ¹⁰

In 2014 under the current BJP government and reflecting its commitment to technocratic programmes, the ADIP scheme began to include more ‘modern’ and ‘technologically complicated’ devices such as electric tricycles, smart canes and digital hearing aids. ¹¹ Following state government cochlear implant programmes in Kerala, Andhra Pradesh and Tamil Nadu and in the armed forces health programmes, cochlear implants were added to the ADIP portfolio, and the programme covers prelingual deaf children below the age of five years (although 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. Children should not have any additional disabilities. To be eligible, families must earn below ₹15,000 ($198) per month. For partial inclusion, families should earn below ₹30,000 ($396) per month. The government purchases cochlear implants from one of four manufacturers through a tender system, and the contract is awarded to the lowest bidder that meets the specification requirements.

A cochlear implant is the most expensive device distributed through the ADIP scheme. The total package associated with a cochlear implant is ₹6 lakhs ($7,934) and covers implantation, the external processor, one year of mapping and two years of rehabilitation provided for free by an empanelled institute or provider, and batteries and replacement cables and coils for two years. The second most expensive device, an electric scooter, costs ₹36,000 ($476), by way of comparison. According to ADIP guidelines, hearing aids, manufactured through ALIMCO, for school-going children can cost up to ₹12,000 ($157), while for everyone else, hearing aids cost up to ₹10,000 ($132). This is a significant discrepancy in spending, and unlike other aids and appliances, cochlear implantation involves surgery, follow-up mapping of the device, and speech and language training. A cochlear implant is internally implanted and so the optics are different than, say, mass distributions of wheelchairs; neither the public nor the media can be present in a surgical theatre. ¹²

After meeting Dr Anup, I set out to learn how cochlear implants came to be included in the ADIP scheme. I interviewed Alok Sharma, the previous joint secretary of the Ministry for Social Justice and Empowerment, an Indian Administrative Services officer much respected and admired by disability activists and rehabilitation professionals. Sharma now is a personal assistant to a state minister and did not have much time to spend with me. While fielding calls and speaking rapidly with few pauses in his speech, Sharma efficiently and energetically told me that the ADIP scheme was revised when the Ministry realised that there was new technology available and that the current level of funding per beneficiary was very low. The Ministry sought input from the All India Institute of Medical Sciences, AYJNISHD), cochlear implant surgeons, cochlear implant distributors and the Ministry of Health. He said:

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.

Sharma stressed that bringing down implant prices was a service not just to India but to the world at large, which would benefit from lower prices. He also said the programme involved ‘a transparent process using web-based platforms and application portals’. Finally, Sharma said:

I feel that technology should be used in India. Our honourable 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 being made in India or maybe we find technology of our own which is cheaper, faster, better and technologically more advanced.

Currently, cochlear implants are not manufactured in India although senior scientists at the Defense Research and Development Organization in India are developing an ‘indigenous cochlear implant’ that will cost one-fourth the price of entry-level current models on the market. This initiative was spearheaded by Dr. Abdul Kalam, India’s former president and perhaps best-known technocrat. After his death, it was taken up by the defence laboratories and is in clinical trials (delayed because of the COVID-19 pandemic; The Hindu, 2021) although many administrators and surgeons profess scepticism about how this implant will measure up to those on the market. Still, this indigenous implant, as it is called, constantly surfaces in conversations as a form of techno-optimism that more directly interpolates the state and highlights the state’s commitment to making cochlear implants available to all people and to disability in general. These references to the development of Indian-made implants and to the honourable prime minister channel both salvation-oriented and nationalist sentiments as deafness would be mitigated through an implant developed and manufactured in India.

As Sharma noted, the central government cochlear implant programme has also developed the expertise of cochlear implant surgeons and allied health professionals: private and public hospitals around the country have been empanelled (enrolled in the programme) to perform cochlear implant surgery. Surgeons at these hospitals are mentored by more experienced surgeons who are sponsored by either cochlear implant companies, the hospitals or the state. There are also empanelled audiologists and speech and language pathologists. ¹³ Professionals have strong desires to become enrolled in the programme as service providers, and surgeons in particular stress that there is something significant about cochlear implant surgery: they can ‘fix’ something and see results. In addition, surgeons and allied professionals receive trainings, mentorship and other benefits from cochlear implant corporations. Before the ADIP programme, only a select number of wealthy people were implanted as they had access to funding and resources. As such, only a small number of surgeons, rehabilitation professionals and implanted people were involved in these multinational networks (often branded by the cochlear implant companies as a family or a community).

However, with the emergence of government programmes, the numbers of implanted people are increasing and ‘everyone wants to be involved’, as an audiologist told me. These connections have particular stakes for the MSJE, which, according to many of my interlocutors in government and disability activism, is a ‘punishment post’ that nobody wants, a steppingstone to a better post in a more prestigious ministry (and Sharma left after a few years). However, the cochlear implant—in terms of the infrastructure that it has brought into being and its global and cosmopolitan reach—has offered the MSJE an opportunity to rehabilitate itself, and it is increasingly in contact with the Ministry of Health, ¹⁴ thus increasing its prestige. Indeed, during visits to the MSJE, bureaucrats were proud to tell me about this programme (as Dr. Anup was). Cochlear implantation thus presents opportunities for government bureaucrats to remake themselves as technocrats working on the vanguard of high-technology interventions, and as I discuss below, the current minister often stresses the numbers of cochlear implants performed under the auspices of the state.

The ADIP scheme’s cochlear implant programme has ushered in new technocratic processes in that electronic platforms are employed: applications for implants are uploaded onto a central government site with requested paperwork such as audiograms, CT scan results, medical reports, disability certification, Aadhaar number, income proof and birth certificate. The documents are then reviewed by a central committee at the AYJNISHD in Mumbai, comprising the institute director (formerly Dr Anup); the heads of the departments of psychology, audiology, education, and speech and language pathology; and two otolaryngology surgeons. According to the programme coordinator, cases are reviewed carefully, there is a process for ensuring that the evaluation takes place in a timely manner, the implant is procured, then it is delivered to the hospital and surgeon, and then the post-implant rehabilitation is to be tracked. After a case is approved, it is added to a waiting list, which is publicly available on the portal, in the interest of transparency. These lists are also testament to the work that the scheme’s administrators as well as well affiliated surgeons, audiologists and rehabilitation workers around India are doing.

Recipients and Beneficiaries

In September 2018, I sat with two audiologists and two students in AYJNISHD’s cochlear implant wing as they saw a steady stream of children coming in for therapy and implant mapping. While the cochlear implant wing was separated from the rest of the institute by a series of doors and down a long hallway (was this deliberate, I wondered?) and despite the posters proclaiming the government’s commitment to the latest high-technology interventions, the wing still felt like a government institute. Names were entered by hand in battered ledgers, therapy rooms were threadbare and there were no fancy toys in sight (as I observed at private cochlear implant clinics where upper- and middle-class people went to purchase implants on the private market). A mother and son arrived without an appointment. They had taken an overnight train from Delhi because they suspected that the child’s implant was broken. An audiologist checked the implant, using proprietary computer software on a laptop, and confirmed that the implant was broken but under warranty. She suggested that the mother and son go to the Cochlear corporation headquarters in the Bandra Kurla Complex, which was five kilometres and a world away in a posh multinational office park, where they would hopefully be given a new implant or have the broken one repaired. I was struck by how government audiologists were sending people to a private corporation and how this so clearly revealed the entangled relationship between the two (and the child was lucky that his device was under warranty). Shortly after my visit, the corporation decided that families were no longer permitted to directly approach it but instead they must engage with a middle person, a licensed supplier. Too many families were showing up at the corporate headquarters, and the corporation seemingly found this presence to be unwieldy and disruptive.

Government officials and ADIP programme administrators use the English word ‘beneficiaries’ for those implanted through the scheme because, as an administrator told me, they are ‘benefitting’ from a government programme. At the same time, cochlear implant companies refer to implant users as ‘recipients’, both in India and internationally. Implanted children, and their families, become beneficiaries and recipients and negotiate complex relationships with the state and multinational cochlear implant companies. Both terms, in foregrounding a (passive) gift relation, obscure the fact that cochlear implants are paid for by either the state, corporate social responsibility funding or private funding. After the two-year warranty provided by the state, children and their families must go directly to cochlear implant companies for repair services and accessories. While some states, namely Kerala and Tamil Nadu, offer long-term support with maintenance for beneficiaries of their state schemes, families enter into relationships of complex dependencies on multinational corporations, which is paradoxical when one considers that cochlear implants are meant to index a nationalist process designed to make deaf children independent.

Despite historical accounts that demonstrate that the first implant users were actively and willingly involved in developing and tinkering with implants, lending their ears and bodies more broadly to a scientific and medical endeavour (Blume, 2010), ¹⁵ implant users are labelled ‘recipients’ by implant manufacturers, surgeons, audiologists and rehabilitation therapists both in India and internationally. Medical and scientific academic journal articles also employ the phrase ‘cochlear implant recipient’. However, unlike using the concept of ‘recipient’ to discuss blood, tissue or organ donation and receiving, labelling an implant user a ‘recipient’ brings up questions about who the donor is and what kinds of labour, transaction and exchange are obscured. As I discuss elsewhere (Friedner, 2022; also see Fjord, 2003; Mauldin, 2016), ‘hard work’ is required to successfully use a cochlear implant, which takes place not in the domain of the state, but rather in the domain of the family. When an implant is purchased on the private market in India, it is clear that the manufacturer is the donor or the giver, even though funding is routed through the surgeon, who also plays a key role in the giving-and-receiving process. The surgeon becomes another kind of benefactor and donor. However, when implants are received through government programmes, it is less clear who the donor is—the corporation, the state or the surgeon. An implant user is simultaneously a recipient and a beneficiary, having received something from a multinational corporation and benefitted from a government scheme. (The state is also a recipient of positive publicity and international acclaim for instituting this programme.)

Crucially, being a cochlear implant beneficiary (and recipient) has different stakes than being a beneficiary of other government programmes which engage through ongoing and consistent distribution and/or camp spectacles. The state constantly distributes and redistributes as objects wear down or need to be replaced—or if there is a photo opportunity or a politician’s birthday. In contrast, leading up to cochlear implant surgery and for two years following the surgery, the state is involved and is materialised in the form of waiting lists, audit reports and follow-up ledgers. Ultimately, however, cochlear implants do not materialise the state but rather multinational corporations. Families return home after the child’s cochlear implant processor is turned on or activated a few weeks after surgery with huge bags or boxes of spare parts and accessories emblazoned with the logos of the cochlear implant corporations.

From Camps to Surgery/From Welfare to Medicine

Traditionally, the MSJE did not provide surgery or negotiate with multinational companies, nor was disability a significant focus of concern. When the Ministry was originally created in 1985–1986, it was dedicated to caste, tribe and women’s and children’s issues, among other topics. A separate Ministry of Women and Child Development was formed in 2007, and then in 2012, a specific Disability Affairs Wing was formally launched. The Ministry has traditionally focused on ‘social rehabilitation’ in terms of policies and financial concessions, although in the realm of disability, the concept of ‘rehabilitation’ has become blurred in its focus on distribution, again, of objects, concessions and other schemes which are increasingly aligned with ‘medicine’. The MSJE does its part in maintaining a vision of a developmental and welfare state (Gupta, 1998, 2012; Gupta & Sharma, 2006; Sharma, 2008) in its focus on welfare and actual distribution of aids and appliances to people recognised as disabled. Indeed, the AYJNISHD and its nodal organisations hold camps in order to reach people and conduct screenings and distribute objects. To be clear: the Indian state has always engaged with disability as a category through distribution of aids, appliances, pensions and reservations or quotas.

The ‘disability camp’ has been a space for the government to demonstrate largesse, care and affection towards disabled populations and to engage with disabled people through what I call ‘anonymous love’, building on Stevenson’s (2014) work on ‘anonymous care’. By ‘anonymous love’, I mean that disability as a category has turned into an exceptional—even transcendent—category under the current government (as we see with Prime Minister Modi’s decision to coin a neologism and call disabled people divyangjan, or divinely abled). This is anonymous love because it is concerned with disabled people as an abstract population, often across disability categories. 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 as a concept offers us a novel approach to considering disability camps because in these spaces, disability and disabled people are exceptional as a mass body to be intervened through the distribution of both objects and love (and after the state stops maintaining the objects, the only thing it has to offer is love). Distributing objects demonstrates love, and through processes of enumeration—how many beneficiaries were served and the numbers of objects distributed—disabled people are included in the nation. What is counted is not people themselves, but rather the number of objects passed out, which is particularly ironic in light of the fact that disability activists and even the state itself have argued that disabled people have been underrepresented in the national census.

Camps loom large in the scholarly and public imagination as sites of mass sterilisation during (and before) the Emergency under Indira Gandhi (Cohen, 2004, 2011; Copeman, 2009; Gupta, 2012; Tarlo, 2003). However, camps are also associated with eye exams, blood donation, blood pressure check-ups and hearing tests, among other things. They are spaces of distribution—of disability objects, kitchen appliances and food, for example. They are sponsored and held by religious organisations, civic bodies, medical organisations, politicians and political parties, and individuals wishing to celebrate something and spread largesse. Copeman (2009, p. 18) notes that members of India’s lower classes see camps as opportunities for free medical treatment and that camps also function as a ‘popularist political instrument’. Cohen (2011, p. 125) points out that camps are associated not only with ‘the immediate, punctuated time of present emergency but rather the periodic and regular time of the civil gift’ and 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 of everyday life in that they are a prime mode of engagement between the state and disabled people, albeit on different registers and scales: there are ordinary camps that do not receive much mention aside from a brief notification in a local newspaper and the inclusion of numbers in an official government report as well as so-called ‘mega-camps’ that feature politicians or celebrities.

The grandest (and most publicised) camps have been held in Prime Minister Modi’s home state of Gujarat or in his constituency in Varanasi, Uttar Pradesh, and are presided over by the prime minister himself. These camps are often set up to break the Guinness Book of World Records in relation to disability (Swatman, 2016; Times of India, 2016). ¹⁶ Consider the following discussion of numbers and records broken, as featured in an official press release about one camp:

At Rajkot Camp aids and appliance to the tune of ₹11.19 Crore were distributed among 17589 divyang beneficiaries including 3000 beneficiaries who have received aids and appliances from the State Government amounting to ₹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 motorised tricycles, 1960 tricycles, 1541 wheel chairs, 77 Cerebral Palsy (CP) chairs, 2896 crutches, 3095 walking sticks, 529 Braille cane, 112 rolators, 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 class 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 divyangjan.

 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… 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. (Press Information Bureau, 2017)

These numbers do not capture the long wait times, boredom and hunger often incurred in waiting for politicians and other benefactors to show up at camps, nor do they capture that in many cases, the distributed aids and appliances are inappropriate or ill-fitting. Children are given adult wheelchairs in which they cannot safely sit and hearing aids are distributed without programming them for specific audiograms. Deaf young adults told me about one-size-fits-all pocket hearing aids distributed ‘like candy’ at disability camps and not deriving any use from them. In a searing critique of such camps, Jo Chopra of the Latika Foundation posted comical photos of young disabled children swimming or slumped over in adult wheelchairs which they had been given at a camp in honour of a politician’s birthday. ¹⁷ These things are thus ultimately to be sold, disposed of or repurposed as scrap metal, chairs or other kinds of material.

The administration has demonstrated commitment to disability by showcasing numbers of objects distributed, prominently featured in annual reports (see, for example, the AYJNISHD 2017–2018 annual report). A focus on numbers makes tangible and durable a relationship that after a certain point endures only through sentiment; even after the state pulls back, it can still say that it has provided a certain number of implants, hearing aids or wheelchairs. An ISL interpreter who regularly interprets for MSJE functions told me that it is easy to interpret for official speeches. The only change is the actual numbers: speeches usually comprise an overview of how many aids and appliances are distributed. Occasionally, however, there are mishaps, such as a time when the Minister of Social Justice and Empowerment Shri Chand Gehlot said during a speech: ‘1700 visually impaired children have been treated with Cochlear Implant Surgery’. ¹⁸ However, the forms of accounting are more complicated when we consider the therapy, maintenance and other processes involved, because implantation is a lifelong process.

Conclusion: Entitlements and Complex Dependencies

While disability rights activists might call for a dematerialised state presence and demand the provision of (abstract) concepts such as rights, access and inclusion, the state is committed to the provision of objects, reservations and quotas under a framework glossed as distributing entitlements. Conversations around entitlement to implants under the ADIP scheme came up repeatedly in relation to the fact that the scheme explicitly targets below-poverty-line families. As an audiologist told me with both pathos and exasperation: ‘This scheme is exactly for people who cannot afford to buy implants, implant parts, batteries, or other accessories’. Families stress that ‘Government is providing this scheme for people like me’; ‘Government is doing for us’ and ‘I am eligible for the scheme’. I asked practitioners what kind of counselling they did around the long-run maintenance of implants and how they informed families about future implant expenditures. Professionals did not provide cautionary counselling around future expenditures although many told me that they urged families to open specific bank accounts or have piggy banks for cochlear implant maintenance in which families would deposit ₹500 per month. They also said that most families would have trouble depositing even this small amount. They stressed that two years of spares and accessories were covered and no one knew what would happen after two years.

Beneficiaries-turned-recipients ultimately struggle with becoming ongoing customers. In interviews with families, I learned about financial struggles to repair implant processors and implant parts, the high costs of batteries and constant worry about what might happen when the processor needs to be replaced as the processor model would eventually break for good and/or become obsolete. Families told me that they struggled to save and allocate funding for even basic maintenance and that the idea of buying a whole new processor seemed impossible and filled them with fear and dread. In an interview with a father of an eight-year-old child who had been implanted for four years during the summer of 2021, the father asked why the government provided the implant when the family was unable to maintain it; he wondered if the government should have provided food instead. ¹⁹ As he said:

Poor people like me, who do labour work, the government gives us no medical benefits. So they did the cochlear implant once, and then they left everything. They don’t care once the implant surgery is over. They don’t pay attention to what happens after. It would be better that they would not do the implant, just give him the money, at least he will be able to put food on his plate and won’t be worried about that.

He also commented: ‘The government should not be performative and give a five lakh [500,000] machine. Instead, they should give money to him so he can eat food. They not only ruin his life but also his parents’ life’. This father’s statements express a desire for more material support from the state as well as a sense of the impossibility of maintaining a relationship with the cochlear implant corporation without state help.

Families said that they were being held hostage by the companies and that it felt like an abusive relationship without an end; they stressed that there was no help from the state after two years. Beneficiary, recipient, hostage? Ultimately, families’ desires to improve their child’s life through becoming a beneficiary leads to other kinds of relationships, namely the relationship of becoming a cochlear implant company recipient and then a consumer. This is not a passive relation—parts break, rechargeable batteries stop holding their charge and die, disposable batteries need to be replaced and implant models themselves become obsolete. When implant models become obsolete, a newer model must be purchased. Under the ADIP scheme and many state government schemes, this expense is borne by the family.

Camps and surgeries are not one-time temporal events, and as objects distributed or surgeries performed become increasingly more complex and embedded in state–corporate relations, the ongoing work of maintaining objects, relationships and processes involves negotiating with multiple actors. I have traced how the state produces presence and practices anonymous love through the distribution of aids and appliances and now cochlear implants—indeed, once the state pulls back post-surgery and post-warranty, the only thing it provides and exudes is performative sentiment. It is important to consider what the state is actually distributing and how distribution furthers biocapitalist processes.

Becoming an implant recipient involves complex dependencies on a device, the state and the corporation, and the question of outcomes—over time and the life course—looms large. I call for additional research on the impacts of state distribution and entitlement programmes in the long run; as James Ferguson (2015) reminds us, distribution is increasingly how the state exerts itself and demands for distribution are also demands for citizenship. What does it mean, however, when the state distributes devices made by multinational corporations that materialise new relations and dependencies? Rather than engaging distribution solely through critique (and as the opposite of rights), as many disability rights activists do, I argue that further attention must be devoted to the connection between rights, distribution and entitlements, as well as the complex dependencies often enabled through and by distributions of technology.