Lectures

Not “just tools”: The framework of equivalence and cochlear implants in Jordan

“Should all deaf children learn sign language?” This seemingly innocuous question was the theme of a roundtable article published in the influential journal Pediatrics in 2015, which compiled responses from a range of stakeholders, including otolaryngologists, linguists, educators, and parents of deaf children. Understandably, this broad diversity also delivered a range of responses: while educator Nancy Mellon and surgeon John NiParko contended that “Reliance on sign language over an extended period of time may negatively affect the child’s capacity to learn spoken language after cochlear implantation” (2015, 171), linguists Christian Rathmann and Gaurav Mathur argued that “a speech-only approach risks linguistic deprivation at a crucial period of development . . . because of the variability in the spoken language development of deaf children who have [cochlear implants]” (2015, 172). Despite their differing stances on the issue at hand, however, what these arguments shared was an implicit assumption that sign language and spoken language (aided in perception and articulation through the use of assistive technology) were more or less equivalent options for parents of deaf children, with each communication tool having its own drawbacks and advantages.

In this piece, I critique this framework of equivalence, drawing upon ethnographic data I collected in Jordan in the summer of 2019. Presenting sign language and cochlear implants in such a manner elides the contexts in which they are embedded and that make them efficacious for deaf children. Such representations misrepresent the “communicative space” (Bishara 2013, 41) between sign language advocates and cochlear implant advocates, especially in Jordan, a context where the cochlear implantation project in particular has the backing of the state and misunderstandings of sign language abound (Hendriks 2008; Al-Fityani 2010).

In recent times, especially in Europe and North America where contentious debates about the best way to educate deaf children have been well-documented (see, for example, Padden and Humphries 1988; Lane 2005), a number of scholars who work in neuroscience, linguistics, and psychology advocating for sign language access for deaf children have moved away from a culturalist critique of the cochlear implant as a technology eradicating Deaf culture. Instead, they have shifted towards a pragmatic critique that deaf children who do not succeed in using cochlear implants and are not exposed to sign language might suffer language deprivation. Breaking down a false binary between signed and spoken languages, they argue that deaf children do not have to choose one or the other, but can—and should—have both (e.g. Humphries et al. 2014; Hall, Hall, and Caselli 2019). In the Pediatrics article, for instance, educators Donna Jo Napoli and Theresa Handley argue that all deaf children need to learn sign language along with spoken language. They write, “Sign and speech facilitate each other, rather than one hindering the other” (2015, 173).

While I understand the intent of using this framework of equivalence between cochlear implants and sign language as a strategic move to connect with advocates of spoken language for deaf children—and I agree that deaf children should have access to multiple language modalities—what are the stakes when sign language advocates present cochlear implants and other medical technologies for deaf people just so, as one tool among others, one choice among many? Sherry Turkle ([1985] 2005) writes against the notion that computers are “just tools” by demonstrating their substantial impact on culture and society in the United Studies in the 1970’s and 80’s. What results when advocates of sign language, in using this framework, remove technologies—here, cochlear implants—from the contexts in which they are embedded?

First, what are cochlear implants? The cochlear implant is a surgically implanted device embedded into the cochlea; by converting sound into digital signals that are sent to the brain, the implant can provide a sense of sound to the implant user. The cochlear implant has spread rapidly around the world and become a “standard of care” in a number of “developed countries,” with 80 percent or more of deaf children undergoing implantation (Humphries et al. 2012, 2). In Jordan, cochlear implantation was first performed in 2003 and has rapidly increased; by 2019, more than 1,170 procedures had been performed. Second, there certainly are notable exceptions to this framework of equivalence. In Neil Glickman and Wyatt Hall’s edited volume on language deprivation and deaf mental health, for instance, they clarify that their book “[argues] that it is not strictly the cochlear implantation (which clearly helps some deaf people acquire spoken language skills and others acquire environmental sound awareness), which is problematic but the spoken-language only philosophy that all too often accompanies it” (2019, 19, emphasis mine). Laura Mauldin’s ethnography of cochlear implantation in the US demonstrates how cochlear implantation is often prescribed as the “right choice” for deaf children through “anticipatory structures”: “persons, practices, and protocols in the clinic that are already in place and are triggered by a particular event and deployed to reduce parents’ resistance to medical interventions” (2016, 28). Michele Friedner’s forthcoming book will also examine cochlear implantation and in particular Auditory Verbal Therapy (AVT)—a speech-only approach to rehabilitating deaf children—as a battleground of expertise in India.

In summer 2019, I spent six weeks conducting ethnographic fieldwork—participant observation and informal interviews—in Jordan, spending two weeks at a state-affiliated cochlear implantation initiative and four weeks at the audiology department of the state hospital that the initiative partners with. Spending time at both places allowed me to see the formulation of policies regarding cochlear implantation—who was eligible? What did it cost? Where were the procedures?—and their implementation at the hospital—what did cochlear implant mapping look like? How old were the children who came to the hospital? Who brought them there? Fieldwork at both places also allowed me to track the harmonies as well as the disjunctures between policy and implementation. An instance of alignment between policy and implementation took place, for example, when I was told during my internship at the initiative that deaf children had to use hearing aids for at least three months before they were eligible for cochlear implants. This was in line with what I observed later at the hospital, when parents who came to the audiology department asking about cochlear implantation for their child were asked if they had tried hearing aids yet, and were told that they would need to do so before their child would be eligible for the cochlear implant. This happened, for example, to Ali, a young child two years and two weeks old, whose parents came into the department for a consultation. Asked by the audiologists if he had tried hearing aids yet, his parents responded, “No, the cochlear implant is better” (la’, al-qawqa‘a ahsan). The audiologists explained that “trying hearing aids is mandatory” (jarib al-sama‘at mafroud) and that he needed to use hearing aids for three months first to see if it was an effective solution.

However, moments of disjuncture between policy—in which sign language and cochlear implants were framed as equivalent options—and implementation—how cochlear implants were provided to deaf children in the hospital—were perhaps more interesting. While doing fieldwork at the cochlear implant initiative, for example, sign language was occasionally discussed in a more or less neutral fashion in our meetings, as a viable option for deaf children who could benefit from it. Jordan has also signed and ratified the Convention on the Rights of Persons with Disabilities (CRPD), which promotes the use of sign language (due to the fact that its formulation involved transnational deaf-led organizations like the World Federation of the Deaf). Article 21, “Freedom of expression and opinion, and access to information,” for example, mentions “recognizing and promoting the use of sign languages,” as does Article 24, “Education,” which mentions “facilitating the learning of sign language and the promotion of the linguistic identity of the deaf community” (UN General Assembly 2006). The hospital, on the other hand, told a different story. Sign language was scarcely mentioned and, occasionally, the visit of a signing deaf person to the department would leave the audiologists nonplussed. Once, for example, a deaf man came to the audiology department and the audiologists found themselves unable to communicate with him as they did not know sign language—they tried using gestures but were largely unsuccessful. When one of the audiologists said to the other, marto btehki (literally, “his wife speaks”—meaning she was hearing), I realized that this was not his first visit to the hospital, and thus likely not the first time there was a communication breakdown between him and the audiologists. They eventually figured out that he wanted hearing aids but they did not have the ones he needed, and so told him to come back later. When he came back with his wife later—who was indeed hearing, she spoke with the audiologists and it turned out that he actually wanted hearing aids for his daughter instead, not himself. On another occasion, a hearing parent I spoke to also told me, when I asked him if his deaf daughter learned sign language, that it was “not allowed” by the speech therapists, who presumably do not know sign either.

What accounts for these disjunctures between representations of cochlear implants and sign language in policy—where they are presented as equivalent—and their actualization in the hospital in Jordan, where cochlear implants are valorized and sign language devalued? While there are likely a myriad of reasons, I think it is especially important to pay attention to the context in which the cochlear implant is embedded. While policymakers might pay lip service to the value of sign language or even genuinely believe in its value, the cochlear implant is not a neutral device but has values built into it. It is not neutral because it is a medical device whose entire purpose is to “fix” deafness—or is at least often advertised as such. As Rayna Rapp writes about prenatal genetic diagnostic technologies, “It is hard to argue for the neutrality of a technology explicitly developed to identify and hence eliminate fetuses with problem-causing chromosomes (and, increasingly, genes)” (2000, 59)—cochlear implants, too, were invented to eliminate deafness. They are also not neutral because they are embedded in broader transnational medical imaginaries and discourses that are often not neutral about sign language (Blume 2010).

From the perspective of relational materialism—the idea that “if matters act, they never act alone,” and that “causes” and “actions” should be given up in favor of “affordances” and “responses” (Abrahamsson et al. 2015, 11)—cochlear implants in Jordan, embedded in discourses like Auditory Verbal Therapy that insist on a spoken language-only approach, afford particular ways of existing in the world that eschew the use of sign language. The biopolitical effects of the cochlear implantation initiative in Jordan—by which deaf Jordanians are encouraged to use spoken language and not to use sign language—might in some ways exceed the intentions of the state, whose adoption of the UN CRPD signals a stance that deaf Jordanians should have access to whichever communication modality would best suit them, whether sign language, spoken language, or both.

The framework of equivalence, which presents sign language and cochlear implants—as a proxy for unhindered access to spoken language—as more or less equivalent tools, is problematic because it elides the broader institutions and networks of power in which these discourses are embedded. In Jordan, the cochlear implantation initiative has the backing of the state and of the medical establishment inside and outside of the country, while sign language does not enjoy the same support—the “right to speak” (cf. Bishara 2013, 25) on the part of cochlear implant advocates and of sign language advocates is not the same.[1] The notion that deaf children should speak—and should use cochlear implants, which can enable them to do so—is therefore generally seen as more legitimate than the claim deaf children should sign, in part due to this discourse’s connection to the hegemony of biomedicine and, in Jordan, to the support of the state. Using this framework of equivalence that presents sign language and cochlear implants as equivalent communication tools ignores such a power differential. With this piece, I hope to reflect critically with my colleagues, whether in anthropology, neuroscience, linguistics, or psychology, about the ways in which we talk about technologies and communication access for deaf children, towards a shared goal of promoting their flourishing in multiple contexts. For me, a starting point is a continued insistence on the asymmetry between the claim that deaf children should speak and the claim that deaf children should sign.


Timothy Y. Loh is a PhD candidate in History, Anthropology, Science, Technology, and Society (HASTS) at the Massachusetts Institute of Technology in Cambridge, MA. Drawing upon the tools of medical anthropology, linguistic anthropology, and science and technology studies, his ethnographic research investigates sociality, language, and religion in deaf and signing worlds in Jordan, Singapore, and the United States. https://www.timothyyloh.com/.


Acknowledgments:

I presented an earlier version of this piece on the panel “Life, death, and everything in between: Medical Anthropology in/of the contemporary Middle East and North Africa,” which was organized by Christine Sargent for the Chronic Living 2021 conference at the University of Copenhagen. I thank my co-panelists and the audience for helpful feedback. I also thank Michele Friedner for encouraging me to submit it to Somatosphere and for subsequent editorial comments, which were also provided by Stefan Helmreich and Eugene Raikhel.

Works Cited:

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Al-Fityani, Kinda. 2010. “Deaf People, Modernity, and a Contentious Effort to Unify Arab Sign Languages.” Ph.D. diss., San Diego, CA: University of California, San Diego.

Bishara, Amahl A. 2013. Back Stories: U.S. News Production and Palestinian Politics. Stanford, CA: Stanford University Press.

Blume, Stuart S. 2010. The Artificial Ear: Cochlear Implants and the Culture of Deafness. New Brunswick, NJ: Rutgers University Press.

Glickman, Neil S., and Wyatt C. Hall, eds. 2019. Language Deprivation and Deaf Mental Health. 1st ed. New York, NY: Routledge. https://doi.org/10.4324/9781315166728.

Hall, Matthew L., Wyatte C. Hall, and Naomi K. Caselli. 2019. “Deaf Children Need Language, Not (Just) Speech.” First Language 39 (4): 367–95. https://doi.org/10.1177/0142723719834102.

Hendriks, Bernadet. 2008. “Jordanian Sign Language: Aspects of Grammar from a Cross-Linguistic Perspective.” Ph.D. diss., Utrecht: LOT – Netherlands Graduate School of Linguistics.

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Humphries, Tom, Poorna Kushalnagar, Gaurav Mathur, Donna Napoli, Carol Padden, Christian Rathmann, and Scott R Smith. 2012. “Language Acquisition for Deaf Children: Reducing the Harms of Zero Tolerance to the Use of Alternative Approaches.” Harm Reduction Journal 9 (16): 1–9. https://doi.org/10.1186/1477-7517-9-16.

Lane, Harlan. 2005. “Ethnicity, Ethics, and the Deaf-World.” Journal of Deaf Studies and Deaf Education 10 (3): 291–310. https://doi.org/10.1093/deafed/eni030.

Mauldin, Laura. 2016. Made to Hear: Cochlear Implants and Raising Deaf Children. A Quadrant Book. Minneapolis, MN: University of Minnesota Press.

Mellon, Nancy K., John K. NiParko, Christian Rathmann, Gaurav Mathur, Tom Humphries, Donna Jo Napoli, Theresa Handley, Sasha Scambler, and John D. Lantos. 2015. “Should All Deaf Children Learn Sign Language?” Pediatrics 136 (1): 170–76. https://doi.org/10.1542/peds.2014-1632.

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Note

[1] In writing about the notion of “balanced objectivity” that most American journalists aspire to in her ethnography of journalism in the Palestinian West Bank, anthropologist Amahl Bishara argues that such an approach “can fundamentally misrepresent the communicative space of the Israeli-Palestinian conflict” (2013, 41) since the right to speak on either side is rooted in vastly unequal material conditions. The current protests and demonstrations taking place in Palestine-Israel following the attempted expulsion of Palestinians from their homes in Sheikh Jarrah in Jerusalem have starkly demonstrated the vast material and power disparities between the Israeli state and the Palestinian people, and shed light on the historic denial of the “permission to narrate” (Said 1984) to Palestinians. As of this writing, a ceasefire in Gaza has been declared after 11 days of bombing, which saw the deaths of at least 232 Palestinians and 12 Israelis.


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