21st Century World Hearing Day, Sign Language, and Cochlear Implant Infrastructures: Quo Vadis?
By guest contributors Michele Friedner and Theresia Hofer
The World Health Organization has designated March 3rd World Hearing Day. To commemorate this day of global advocacy and awareness raising around hearing loss, nation-states and civil society organizations signpost their public awareness campaigns, hearing screenings, and medical interventions to diagnose, treat, and prevent hearing loss. Notably, cochlear implantation is heavily featured in popular media coverage and official press releases. This is unsurprising: cochlear implantation is the gold standard in medical intervention on deafness and they presumably offer users the opportunity to participate in everyday life through listening and spoken language. They are heralded as the first successful bionic device, a model for other such devices, and the World Health Organization stresses that they are cost-effective as investments in human capital.
We write as medical anthropologists researching the changing medical, social, and political terrain of deafness in India, China, Pakistan, and Bhutan from 2007 onwards. We argue that cochlear implants are not a panacea, and that the normalization of cochlear implantation has resulted in fewer choices made available to families and complex dependencies on device manufacturers. Through research in clinics, schools, family homes, and government offices, and interviews with surgeons, government bureaucrats, families, NGO and allied health professionals (including audiologists and speech and language therapists), we learned that cochlear implantation is increasingly held up as “the only option” for families pursuing an intervention for their deaf infants and children. As implantation becomes normalized, which is in no small part because of manufacturer outreach campaigns directed at states, health professionals, and families, families are urged to implant their child as quickly as possible, to take out loans to pay for cochlear implant surgery, and to enroll in state or charitable programs providing cochlear implants (and the number of national programs globally is increasing).
Large-scale newborn and early childhood hearing screening, often supported by cochlear implant manufacturers working with national public health officials, are emerging or established. We are not against such screening, and we support early detection and intervention. However, medical professionals use newborn hearing screening to funnel families towards cochlear implantation. Medical personnel remain uninformed about signed languages and about the language rights of deaf people which are granted, not least through the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and which are in national laws. Families in all countries in which we work told us that they were not aware that their country had a national sign language and that health care providers adamantly told them not to gesture or use visual communication with their children. We are concerned about the development of infrastructure that facilitates only one option. Newborn hearing screening should be performed in the service of opening multiple pathways.
Moreover, the fact that people are tracked into cochlear implantation is problematic in light of what families call “maintenance problems.” External processors break. Batteries die. Cable coils fray. Devices and software become obsolete and need to be updated. In India, the central government program and many state programs are specifically targeted at families living below the poverty line. In Pakistan, the Bait-ul-Maal program covers only the surgery, if that. In China, the state and private insurances now subsidize both Chinese-made and foreign-made implants at 80-90% of the cost, with general preference for foreign-made products by those who can afford it. Families struggling to make ends meet are unable to prioritize purchasing proprietary cochlear implant parts, batteries, or replacement processors. Families are not informed about the need for constant and ongoing maintenance before surgery and if they are, they are not told how prohibitive the costs are. Parents in Pakistan frequently told Friedner that taking care of a cochlear implant is like “raising and feeding an elephant.” National and civil society cochlear implant programs need to support a child well beyond the initial implantation and after the fanfare of World Hearing Day. Health professionals need to holistically consider what a good outcome is, beyond just implantation.
Why not recognize the existence of sign language infrastructures that already exist and that enhance our human and linguistic diversity? India, Pakistan, China, and Bhutan—along with other LMICs—have excellent deaf schools in which children learn a national sign language, which is accessible to them and gives them education, social ties, and professional skills. Investing in sign language infrastructures in addition to cochlear implant infrastructure is crucial. There is no contradiction in supporting children to become signing and speaking CI users, if this is what they and their families desire, after being provided with information about all linguistic opportunities.
We met implanted deaf children without age-appropriate, or in some cases any, speech. They had received sporadic maps, they were implanted late, or they were implanted early (enough) but their cochlear implant was not providing accessible input conducive to language. To be clear, this does not only happen in LMICs: the recent situation in South Australia in which deaf children were incorrectly mapped for many years is just one example. And despite cochlear implant corporations’ efforts to build capacity of audiologists as well as to provide remote mapping service through information technology platforms, mapping is not foolproof. It is therefore time to nuance how we think about cochlear implants and to see them as one of multiple options. Medical providers and public health officials must educate families of all options, their costs, and the tradeoffs that exist. Importantly, as we see in the latest international Family Centered Early Intervention Consensus Statement, deaf people deserve a seat at the table when the futures of their languages and wellbeing are at stake.
About the authors:
Michele Friedner is a cultural medical anthropologist and the chair of the Department of Comparative Human Development at the University of Chicago in the USA. She conducts research on deafness and disability more broadly in India and elsewhere in South Asia. She is the Co-PI on a National Endowment for the Humanities-funded project titled “The Global Cochlear Implant: Provincializing Brain Implants through Disability Technocultures.”
Theresia Hofer is a senior lecturer in social anthropology at the University of Bristol in the UK. She conducts social, medical, and linguistic anthropology research on how local and global aspects of disability intersect in the day-to-day with ideas about and the lived experiences of disability and being deaf. Her regional research focus is the Tibetan and Himalayan region, South Asia, China, and Japan.
Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS.
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