Private Funding, Government Hospital

Pramod is a six-year-old boy who lives with his lower-middle-class family in a town that is sixty kilometers from Pune, Maharashtra. His family noticed that he was not responding to sounds when he was about two years of age. During the Navratri holiday (which lasts for nine nights), his father observed that Pramod did not respond to the music that had been playing nonstop around the family home. The father took the child to a local pediatrician, who also observed that Pramod was not speaking. The pediatrician explained the connection between hearing and speaking to the family and suggested that they take him to an ear, nose, and throat doctor in Pune, about an hour by bus from their home.

The family visited an ENT surgeon who worked with an audiologist. Tests, including the brain-stem evoked response audiometry test, which measures the reaction of a child’s nervous system to auditory stimulation, were conducted, and Pramod was found to have a severe to profound hearing impairment in both ears. The surgeon recommended a cochlear implant as soon as possible and said it would cost between Rs 15 lakh (US$19,930) and Rs 16 lakh (US$21,260). The family decided to see two other doctors, who also recommended an implant. They then went to a government hospital in Pune, where the cost of the surgery and implant were significantly cheaper at Rs 5 lakh (US$6,663). They were not given a choice of companies from which to purchase the implant because the government hospital had a contract with a particular cochlear implant corporation and access to only one device. The family was given a list of required presurgical procedures, including an MRI, a CT scan, and numerous vaccinations; all of these were expensive. They were also told that they had to purchase hearing aids for Pramod to wear in the interim, at a cost of Rs 35,000 (US$466). The audiologist counseled them to purchase only one hearing aid to save money; Pramod would need to switch that hearing aid from ear to ear.

To pay for the implant, Pramod’s father arranged for funding from various sources, including Rs 2.75 lakh (US$3,664) from the Prime Minister’s National Relief Fund, Rs 50,000 (US$666) from the state Chief Minister’s Fund, Rs 1.25 lakh (US$1,665) from a charitable trust, and Rs 10,000 (US$133) from Being Human, a charity started by the Bollywood star Salman Khan. The father also approached the Rotary Club and the small private company where he worked; his supervisor arranged for everyone at the company to donate one day of salary. Ultimately, the family paid Rs 1.25 lakh of their own money. Approaching all of these sources and cobbling together the money took about five months. The surgery went smoothly, and Pramod’s father commented on the free meals that they received in the hospital as well as the friendly workers; he did not want to talk at length about his son’s surgery except to say that he, his wife, and their extended family were worried but felt that they did not have any other option besides surgery.

After the postsurgery recovery period, Pramod’s mother took him to Pune for activation, mappings, and weekly therapy sessions, traveling an hour each way by bus from their home to the city. Pramod’s father could not accompany them because he had to work. It was the first time that Pramod’s mother had traveled extensively, into the city or anywhere else, unaccompanied by other adults. In therapy sessions, which lasted twenty to thirty minutes, the therapist taught her to talk to her child constantly—although it often seemed that she and Pramod spent more time sitting in the waiting room than they did with the therapist. In the waiting room, mothers chatted and compared notes, sharing tips with each other. Both the therapist and the audiologist who worked with Pramod and his mother had completed the standard bachelor’s degree in audiology and speech and language pathology and had also received training from hearing aid and cochlear implant companies. In addition to their formal training, they had a great deal of experience because of the sheer numbers of people with different diagnoses whom they saw in their clinic.

Today, Pramod’s father estimates that Pramod had twelve mappings altogether, and he is thankful that the implant has functioned well over the past three and a half years. During that period, the family spent Rs 5,000 (US$67) on a new coil and also purchased new batteries. The clinic has encouraged the family to bring the implant in for servicing (they would send it to the manufacturer), but that would cost Rs 45,000 (US$600), a significant amount for the family. The father has decided not to do this because of the expense and the fact that Pramod would need to be “off-ear” during the servicing period (the clinic does not have any loaner machines, and the hearing aid that Pramod wears in his other ear does not seem to offer him much assistance). Pramod is attending a local private school, where he is keeping up with his peers, with much help from his parents, although his teacher and the school administration are adamant that they will not give him any “special attention.” His parents worry constantly that something will happen to the implant processor at school—that someone will hit him or pull it off, or that he will lose it. They are also concerned because Pramod’s speech is not especially clear, and they think that not everyone will be able to understand him.

Central Government Funding, Government Hospital

Anjali is four years old and lives in Noida, outside Delhi. Her family are lower caste and class migrants from Uttar Pradesh. Her mother suspected that Anjali might have a hearing impairment when she was one year old because the child did not respond to loud sounds at home. Anjali’s grandparents, with whom the family lived, told the mother not to worry. The pediatrician whom the family saw initially was also dismissive. Anjali’s mother attempted to assuage her concerns by going to the local temple, but she still observed Anjali constantly and worried. Finally, when Anjali was three, the family decided that something must be wrong. They traveled to a government institute, where students performed a series of hearing tests on Anjali and, after verifying the results with their supervisor, informed the family that the child had a severe to profound hearing impairment. The supervisor told the family about the central government’s Assistance to Disabled Persons for Purchase/Fitting of Aids/Appliances scheme and its provision of hearing aids and cochlear implants. She suggested that they seriously consider having Anjali implanted. The supervisor also gave the family a list of the documents they would need to complete before Anjali could receive an implant. The family was told to come back the next week for additional discussion and to pick up hearing aids—although the supervisor commented that the hearing aids might not make a difference because of the severity of Anjali’s hearing loss.

The family returned the following week, and a group of audiology students gave them a twenty-minute presentation about the implant surgery and the external processor, or “machine.” During the presentation, the students checked off boxes on a form that was designed to ensure that they covered critical points about the surgery, the importance of the child’s wearing the external processor, and the family’s responsibility to take the child for mapping and therapy after the surgery. Following this presentation, the students asked the family members about their expectations, and they responded that they wanted Anjali to be “like a normal child.”

The family decided to proceed, but it took them a while to put together their package of documents for the ADIP scheme. Finding their caste certificate took some time, because they were no longer living in their native place. Like Pramod, Anjali had to undergo a battery of tests and receive a number of vaccinations, all of which put pressure on the family’s already strained finances. Finally, they assembled all their documentation and went back to the institute, where the documents were uploaded to the ADIP web-based platform. About three months later, when Anjali was three and a half, they received a letter telling them to report to the Delhi-based hospital they had chosen for surgery, as a shipment of cochlear implants had just arrived. Nervously, the family did as instructed, and Anjali had her surgery, after staying overnight in the hospital the night before. At the hospital, her family met a number of other families whose children were also having implantation surgery.

Anjali’s activation session, which took place three weeks after surgery, was overwhelming for the family. They were given a huge cardboard box full of plastic bags containing spare parts for the implant processor. They had not been told about maintenance costs and their responsibilities for the device until that moment.

Today, Anjali’s mother still worries about the future costs of her daughter’s implant, but she is trying to focus on Anjali’s development and talking to her all the time in the present. She believes that the ADIP scheme targets poor people like her family and that in the future the government will adjust the scheme and cover maintenance costs. Still, she worries that if the device breaks or it needs a new battery or cable, the family will not be able to afford it. She hopes that there are NGOs that could help. As Anjali has been implanted for less than two years, the family is still traveling back and forth to the government institute for mappings and therapy sessions. Each time they go to the center, they are seen by different student therapists. Like Pramod’s therapy sessions, Anjali’s are about twenty-five minutes long, and Anjali’s mother is given exercises to do at home. The family is encouraged by Anjali’s progress, and they would like her to attend a government school near their home, but they are worried about seeking admission because of her deafness.

State Government Funding, Private Hospital

Arun is a three-year-old boy who lives outside Vellore, Tamil Nadu. He has an older brother and sister who are deaf. They wear hearing aids that help with environmental sounds. Both siblings attend a deaf school where Indian Sign Language is used, although many of the teachers do not sign fluently or even proficiently. When Arun was one year old, his family discovered that he was also deaf. They were referred to a private hospital where cochlear implant surgeries were conducted under the Tamil Nadu Chief Minister’s Comprehensive Health Insurance Scheme. The surgeon at the hospital, eager to do more cochlear implant surgeries, submitted Arun’s paperwork to the program’s administrators in Chennai, and a few months later, his implant was approved. Both before and after implantation, Arun went for therapy at a new speech and language center at the Vellore hospital. After implantation, the state program required documentation of his therapy attendance and progress; the therapists kept meticulous records and uploaded case notes and videos of Arun’s sessions. In contrast to his brother and sister, Arun began listening and speaking well with therapy, and his vocabulary was almost at age level. In addition to taking Arun for mapping and therapy appointments, Arun’s parents were encouraged to undergo genetic counseling and testing. However, his mother was no longer concerned about the possibility of giving birth to another deaf child because of the existence of cochlear implants.

Recently, almost two years after implantation, Arun lost his implant processor while riding on his father’s scooter. The family anxiously informed the hospital clinic and were told to wait for some time. A few weeks later, they were invited to a program in which politicians would give out replacement parts. The hospital told them that this would be the fastest way to get a replacement, as the processes for dealing with replacements, repairs, and upgrades through the Chief Minister’s Insurance Program had not been fully rolled out yet; things were being done on an ad hoc basis. At the program, Arun received a new processor and was photographed shaking hands with a local politician. Arun was excited to start wearing his implant again; he had missed being able to hear, and his parents had been worried about a decline in his development.

Private Funding, Private Hospital

Karishma is a three-year-old girl from an upper-class family in Bombay. Her family discovered that she had a hearing impairment shortly after her birth because she underwent newborn hearing screening at the hospital where she was born. Her parents quickly did research and looked at many international websites, such as that of the U.S.-based Alexander Graham Bell Association, and they learned about the importance of early intervention. When Karishma was six months old, she received her first hearing aids and started attending a therapy clinic in the heart of the city. The clinic was run by a certified auditory verbal therapy practitioner who had trained under an international AVT expert. The entire family attended weekly therapy sessions that were an hour in length, and they were given structured homework to do after each session. The therapy clinic had an in-house audiologist, and in addition, the therapist had close connections with well-known cochlear implant surgeons in Mumbai. She recommended that the family make an appointment with a specific surgeon when Karishma was nine months old. The family went to see the surgeon and decided to move forward with surgery.

First the family had to decide on an implant corporation and a particular device. The surgeon arranged for representatives from the three major corporations to contact them. The representatives came to their house armed with glossy brochures and YouTube videos, as well as contact information for some of their successful recipients. Karishma’s parents decided that they wanted the Cochlear corporation’s newest processor, the Kanso, which is marketed as the world’s smallest cochlear implant processor. The family was not concerned about money, but Karishma’s mother did say that the price of the cochlear implants was comparable to the amount in gold that she would need to provide for Karishma’s eventual marriage, and so why not spend the money now? Upon the urging of their therapist, audiologist, and surgeon, the family decided on bilateral implants, and Karishma was implanted when she turned one year old. After implantation, she continued with therapy weekly and also attended a music appreciation class. She currently attends preschool and has developmentally typical speech abilities. Karishma is being raised entirely in English, although her grandparents occasionally speak Sindhi to her when they are together.

Government Employee Funding, Private Hospital, Older Child

Daniel is an eleven-year-old boy from a middle-class family in Bangalore. He was diagnosed as having a severe to profound hearing impairment at the age of three, when, at the urging of his pediatrician, his family took him to be evaluated by an audiologist. After diagnosis, Daniel wore high-powered analog hearing aids and went to speech and language therapy weekly and then monthly. He attended a neighborhood nursery school and then a private school for lower kindergarten onward. His mother, who did not work outside the home, often accompanied him to school and spoke with his teachers about what he was learning in class; she then worked with him on these things at home. Daniel also went for private tutorials after school. His mother could always understand his speech, even when other people could not. When he was not working with his mother or in tutorials, Daniel loved to play cricket with the neighborhood children in the lane in front of his apartment building.

When Daniel was nine, his family learned about cochlear implants and sought out a meeting with a surgeon at one of Bangalore’s private hospitals. The surgeon told the family that Daniel was not the ideal implant candidate because of his age, but he would definitely benefit from implantation: he would be able to at least hear environmental sounds, and his listening and speaking ability would possibly, even probably, improve. According to the surgeon, cochlear implantation would only be a good thing for Daniel, although learning to use the implant would require a lot of time and effort. The surgeon also stressed that the cochlear implant would be beneficial for Daniel’s safety: he would be able to cross the road with more ease, and he would be able to stay home alone because he could now hear if people knocked on the door. Daniel’s mother was ambivalent about the surgery, but his father was very much in favor. As Daniel’s father was a government employee, the surgery was paid for with funds available through his workplace.

After surgery and activation, Daniel and his mother went for mapping and therapy at the surgeon’s private clinic. They worked on sound detection for over a year, and Daniel was able to detect some new sounds, although he was not (yet) able to identify them. The implant also did not help with his listening and spoken language, which disappointed the family. Despite the surgeon’s reminders that they should manage their expectations, they had harbored secret hopes that Daniel’s speech would become clearer. Today, Daniel is not sure if he likes the implant or not: he says that it is noisy, and he also worries about it getting hit with a ball when he plays cricket. However, as the surgeon, audiologist, and speech and language therapist told the family, it is possible that Daniel will continue to benefit, as he is still a very young child, only two years old, in terms of his implanted age.

What about the communicative, sensory, and relational engagements that are not included in (making up) these composite cases? There are diverse emotional, political, moral, and sensory infrastructures that scaffold trajectories and serve as connective tissue for the processes discussed in these ideal-type cases. Sensory infrastructures—both inside and outside the body—are always in flux, despite attempts to fix them as solid and finished. Even if a case file is closed, there is no finished outcome after implantation. “Becoming normal” requires constant maintenance.