“Notes” in “Sensory Futures”
Notes
Introduction
Sanchez (2020, 272) provides a succinct and accessible explanation of the work of the audiogram: “The near-universal measure of hearing loss is the pure tone audiogram, which registers the decibel level required for individuals to perceive a range of auditory frequencies (typically between 125 and 8,000 hertz). Levels of hearing loss are categorized from ‘mild’ to ‘profound.’ Even ‘profound’ hearing loss, however, is a range indicating that an individual cannot detect tones at a number of frequencies when they are played at or over 90 decibels. As this description suggests, these classifications are necessarily imprecise, often functioning to mask the individual and idiosyncratic ways individuals perceive sound. Because the audiogram plots hearing thresholds at a variety of pitches, and because hearing loss is variable, diagnostic labels are based on taking an average of the individual’s performance. As a result, one might simultaneously have ‘profound’ and ‘mild’ or no hearing loss (or be both profoundly deaf and hearing) in the same ear, depending on the pitch. Deaf people, that is to say, inhabit soundscapes that are often effaced or poorly understood.” Hui, Mills, and Tkaczyk (2020, 7) point out that “the modern scientific and popular understanding of hearing—and the practice of hearing itself, reinforced through standardization and training—codeveloped with such testing. Hearing no longer exists without audiometry.”
According to the Oxford English Dictionary, rehabilitation is the “restoration of a person to health or normal activity after injury, illness, disablement, or addiction by means of medical or surgical treatment, physical and occupational therapy, psychological counselling, etc.” Rehabilitation is seen as a way to repair and restore the body, returning it to previous states and levels of functioning; it also focuses on the reintegration and reincorporation of the individual body into the national and social body (see Stiker 1999). In contrast to rehabilitation, however, habilitation, according to the OED, is “the action of enabling or endowing with ability or fitness; capacitation, qualification.” While rehabilitation is concerned with minimizing loss and restoring functioning, habilitation is focused on maximizing potential, on capacitating the individual child to become what they should become. If rehabilitation is about remaking or transforming, habilitation is oriented toward becoming. The concept of habilitation is typically used to talk about work with and on children and brings up questions around what we mean by potentiality, capacitation, and possibilities for living both normative and nonnormative lives. As Mauldin (2016, 63) writes: “While rehabilitation is the process of restoring what was lost, habilitation creates an ability that never was—or in the case of dealing with children, one that has yet to be developed.” In this book I use the term re/habilitation to stress that rehabilitation and habilitation have different albeit overlapping stakes and that while medical institutions, practitioners, and the state, among others, might speak of rehabilitation, they often mean habilitation, or the creation of capacities and qualities that do not yet exist.
In India, a bachelor’s degree is available in audiology and speech and language pathology combined (BAASLP). This means that the majority of audiologists are also speech and language therapists and vice versa, although there is a tendency for individuals to specialize in one of the two fields. On the master’s level at some institutions, students can choose to focus on audiology or speech and language therapy. In this book, when I discuss therapists with specialized certification in auditory verbal therapy, I refer to them specifically as auditory verbal therapists, AVT specialists, AVT practitioners, or the like.
That Neera’s family learned a new language to communicate with her is ironic, as many of the arguments made internationally about not using signed languages with deaf children stress that it is unrealistic to expect parents to go through the difficult process of learning a new language to communicate with their children. See, for example, the comments of Jane Madell (2015), a well-respected U.S. audiologist and speech and language therapist.
In this book I move among the terms implant recipient, implant beneficiary, implant user, and implantee, each of which has its own politics and emotional register attached. I discuss the logics associated with the concepts of recipient and beneficiary in chapter 1.
The AzBio test is distributed by Auditory Potential, http://www.auditorypotential.com.
Mills (2020, 27) notes that such tests “naturaliz[e] the ambiguous concept of intelligibility as a quantifiable variable and reinforc[e] biases about what counts as average conversational spoken English.”
Increasingly, practitioners speak about the importance of getting people into the “speech string bean,” which is located at the very top of the speech banana. A person who is hearing in the string bean will hear about 90 percent of what is said. In contrast, a person who is hearing at the bottom of the banana will hear only 10 percent of what is said. See the brief video “Audiology Fruit and the String Bean,” Hearing First, accessed September 15, 2021, https://www.hearingfirst.org.
For an engaging simulation of what hearing loss sounds like, see “Fred Flintstone Video Hearing Loss Simulation,” YouTube, posted March 11, 2016, https://www.youtube.com. For critiques of such simulations, see French (1992) and Nario-Redmond, Gospodinov, and Cobb (2017). Kafer (2013) argues that simulations locate disability in the body instead of portraying it as a relational and interactive process.
See Wallmark and Kendall (2018) on the difficulty of describing sound and especially timbre. Cochlear implant corporations and individual artists have recently focused on creating music that sounds good to people with cochlear implants, in some cases composing music directly for implant users’ individual profiles (Helmreich 2018).
In describing deaf culture, Padden (1980, 93) stated: “Members of the Deaf culture behave as Deaf people do, use the language of Deaf people, and share the beliefs of Deaf people towards themselves and other people who are not Deaf.”
I wonder about the sensory worlds of abstract rights talk and how these do and do not imprint upon the body.
The U.S.-based National Association of the Deaf released a position statement on cochlear implants in 1991 that was adamantly against implantation and expressed strong reservations about the ethics of implanting children. In 2000, this statement was revised to be more neutral, describing cochlear implants as just one tool among many available to deaf people. The 2000 statement was removed in 2020, and currently the association has no official position on the subject. Similarly, the World Federation of the Deaf takes no position on cochlear implants. While this lack of a position perhaps reflects ambivalence not unlike my own, I find this nonengagement disconcerting, especially in relation to the financial aspects of cochlear implant maintenance, discussed in chapter 4.
See Friedner (2015, 2018), Kusters (2017), and Ladd (2003). Cochlear implantation introduces fractures based on neuro-difference. For example, a deaf ISL teacher told me that he does not have much in common with a deaf child with a cochlear implant because the child has a “different brain” from his. He located their difference in neurology and not in upbringing or language modality used, thus neurologizing social relations.
See Carey, Block, and Scotch (2020), Rao (2006), and Vaidya (2016).
At the annual symposium of the Alexander Graham Bell Association for the Deaf and Hard of Hearing in 2018, I attended a session in which participants were divided into different stakeholder groups: professionals, families, and deaf adults (never mind that someone might have belonged to more than one category). We were supposed to discuss our concerns within our respective groups. I sat with the deaf adults (we were the smallest group), and we discussed how we wanted families to see us as role models with valuable knowledge and expertise to share. At one point when we were reporting back to the other two groups, a mother from the families group asked us: “What do you know about my child and what right do you have to speak for her? She was born in a different time period and had different opportunities with newborn hearing screening and early implantation options, things that did not exist when you all were young.” Some of us received these comments as a sharp slap. Similarly, Fjord (2001, 111) writes about a young deaf woman in Norway who viewed a video of an implanted deaf child and asserted kinship with the child. In response, a cochlear implant surgeon told her: “She will never be in your category. She can do whatever she likes.” According to Fjord, this surgeon rejected the possibility of connection between the two. In another work, Fjord (2003, 70) notes that cochlear implants “symboliz[e] the differing forms of kinship and cultural expertise perceived to be seriously at stake.”
Following Spivak (1999) and Chakrabarty (2008), I am interested in “provincializing” these teleologies as well as teleologies of cure and pride. See also Friedner and Zoanni (2018).
Consider Kafer’s (2013, 1) comments about how disability/disablement has resulted in people constantly telling her what the future holds for her: “But people have been telling me my future for years” and “My future is written on my sbody.”
Also see Corker (2001) on disability sensibilities and the ways that attending to sensibility allows us to move beyond identity categories.
See Appel, Anand, and Gupta (2018), Gupta (2018), and Khan (2006). Appel, Anand, and Gupta (2018, 20) describe infrastructure as “a material and aspirational terrain for negotiating the promises and ethics of political authority, and the making and unmaking of political subjects.” They stress that infrastructure “is an intimate form of contact, presence, and potential, one that serves as an important locus for the evaluation of the morality and ethics of political leaders and the state” (22).
Notably, Vygotsky conducted research on disability and was an advocate for the importance of signed languages in deaf children’s development. See Gindis (1999) and Zaitseva, Pursglove, and Gregory (1999).
Griffin and Cole (1984, 47) note that the concept of scaffolding is teleological and does not take account of children’s creativity. They cite a statement made by Caryl Emerson in 1983, that the zone of proximal development is “a dialogue between the child and his future; it is not a dialogue between an adult and an adult’s past” (62).
See Crasborn and Hiddinga (2015), Green (2014a), Holmström and Schönström (2018), Kusters et al. (2017), Moriarty Harrelson (2017), and Pennycook (2017b).
Also see Brueggeman, Garland-Thomson, and Kleege (2005), Duque and Lashewicz (2018), Friedner and Block (2017), and Schriempf (2012) for disability studies critiques of normative understandings of (verbal) articulateness and communicativecompetence. Anthropologists of autistic sociality have also endeavored to expand how we see communicative competence in the case of disability; for example, see Ochs and Solomon (2010).
Similarly, Sterne (2003, 16) observes that “the audiovisual litany renders the history of the senses as a zero-sum game, where the dominance of one sense by necessity leads to the decline of another sense.” Also see Howes (2006).
I agree with Howes (2019, 22) that “sensory values are social values and social interaction is sensory interaction.” Also see Geurts (2002).
Lloyd and Tremblay (2021) make the important point that neuroscience research has shifted from a competitive model to a complementary model in its approach to understanding deaf people’s multimodal sensing. As Lickliter (2011, 592) points out: “It is now known that the senses function in concert even in very early infancy and that young brains are organized to use the information they derive from the various sensory systems to enhance the likelihood that objects and events will be detected rapidly, identified correctly, and responded to appropriately, even during very early development. . . . Evidence obtained from neurophysiological research over the last decade indicates that the brain is remarkably skilled at integrating input from the different sensory systems to maximize the information available for perception and action.” Similarly, Gibson (1966, 47) argues that the senses should be seen as “perceptual systems,” and that “they are interrelated rather than mutually exclusive.” Howes (2006) writes about intersensoriality and the many dense relations that exist between the senses.
Brueggemann (2009, 164) perhaps would call this a focus on “little ‘d’ deafness” or “little ‘d’ deaf studies.”
Whyte (2014) terms such collective research “polygraphy.”
Ott (2014, 120) writes that “disability is unique in the extent to which it is bonded with technology, tools, and machines as a medium of social interaction.”
For additional criticisms of cochlear implants, see Sparrow (2010) and Valente (2011).
Mauldin (2016, 4) writes about cochlear implantation as a process of “ambivalent medicalization” through which “individuals are both empowered by and surrendering to the process of medicalization.”
For discussion of the ambivalence of Japanese parents in making decisions to implant their children, see Okubo, Takahashi, and Kai (2008). As these authors note, their study is the first of its kind in that it examines parents’ reluctance, another mode and sentiment of engagement.
1. Disability Camps and Surgical Celebrations
On Indian disability rights movements, see Bhambani (2003), Friedner, Ghosh, and Palaniappan (2018), and Mehrotra (2011).
See Cohen (2004, 2005, 2011).
I thank Vijayanka Nair for this pun phrase.
See Chaudhry (2015), Friedner and Osborne (2015), and Hiranandani and Sonpal (2010).
Writing about prosthetics, Terry (2017, 91) calls a similar nexus a “bionic assemblage.”
I think here of Roberts’s (1997) provocative points about the implantation of Norplant into the arms of Black women in the United States and about sterilization efforts internationally. With cochlear implants, we are supposed to see implantation, and the exercise of state power, in a positive, productive, and benevolent light.
Gupta and Sharma (2006, 283) point out that such investments are concerned with “the need to invest in human capital for the development of the nation-state.” See also Gupta (1998, 2012) and Sharma (2008).
In its pursuit of development and welfare, the Indian government has officially structured its policy toward disability based on a medical model. In order to receive benefits, entitlements, or objects intended for disabled people, an individual must be certified by a government-employed physician as possessing a certain percentage of disability within a specific category. See Kochhar (2013) on the process of disability certification.
I thank Kenneth MacLeish for pointing out the subtleties of these performances.
While this may be salacious hearsay, multiple sources told me that the Indian distributor of the Neurelec cochlear implant was responsible for “educating” the joint secretary of the Ministry of Social Justice and Empowerment about the benefits of cochlear implants. Neurelec was subsequently awarded the first government contract, a selection that caused much consternation, because this implant was not approved by the U.S. Food and Drug Administration. There were also concerns about the minimal re/habilitation and support infrastructure offered by the Indian distributor. Hearsay or not, this line of discussion offers insights into spheres of influence and complex relationships among Indian distributors, the state, and multinational corporations.
Sharon Alex, “Roll Back on GST on Cochlear Implants and Accessories,” Change.org, accessed September 15, 2021, https://www.change.org/p/sharon-ann-alex-roll-back-on-gst-on-cochlear-implants-and-accessories.
Note that cochlear implant prices are not (yet) standardized. As Nagarajan (2017b) demonstrates, the amounts that individual states currently pay for the same implants may vary by Rs 100,000 or more.
One enrollee in the indigenous implant human trials lost his hearing as a result of taking a particular medication to treat his multidrug-resistant tuberculosis; he did not have access to safer medications because of prohibitive patent laws. In chapter 5, I discuss the case of Vandana Iyer, another deafened TB survivor who was implanted. If successful, the indigenous cochlear implant may serve as a nationalist “fix” (Benjamin 2019) for inequalities stemming from international patent laws.
As Nagarajan (2017c) points out, the majority of state-funded cochlear implant surgeries are performed in private hospitals, and in Tamil Nadu, mapping and therapy are also provided by private practitioners.
Mazzarella (2006, 476) writes about technocratic efforts to be transparent: “E-governance is, it seems to me, one important avatar of a more general desire for what I am calling a politics of immediation—that is to say, a political practice that, in the name of immediacy and transparency, occludes the potentialities and contingencies embedded in the mediations that comprise and enable social life.” The ADIP online platform and waiting lists, as well as the actual logistics involved in distributing, implanting, and activating cochlear implants, attest to immediacy as fantasy.
In contrast to the ADIP program’s focus on numbers, scant data are available on how many cochlear implants have been done internationally or specifically in India. Cochlear implant corporations do not share precise data. This refusal to release numbers into the public domain is ironic in light of the fact that the companies do produce marketing videos that detail the private stories of individual recipients. According to its 2021 annual report, Cochlear, the company with the largest market share, has provided more than 650,000 implantable devices internationally. By way of comparison, neither MED-EL nor Advanced Bionics releases information on the numbers of its implant recipients. In response to my e-mail inquiry, a MED-EL public relations executive stated that the global number of MED-EL recipients “is something that we do not communicate on.” MED-EL employees informally told me that the company has approximately 200,000 recipients internationally, and the Advanced Bionics online newsroom states that the company has 100,000 recipients around the world (https://www.advancedbionics.com). According to the U.S.-based National Institute on Deafness and Other Communication Disorders (2021), as of December 2019 there were 736,900 cochlear implant users internationally. In India, Cochlear estimates that it has approximately 15,000 recipients. MED-EL, Advanced Bionics, and Neurelec will not share their India-specific numbers. In 2019, an official in the Cochlear Implant Group of India informally estimated that 40,000 cochlear implant surgeries had been done in India up to that point.
When I raised the question of why people with cochlear implants are called “recipients” on an international Facebook group devoted to cochlear implant experiences, one group member said: “We are recipients because we have received the gift of hearing and the gift of sound.” However, this language obscures that implant corporations are for-profit entities and that the neuroprosthetic/bionic market is one of the fastest-growing industries in the world at the moment.
I see overlaps with India’s Green Revolution agricultural programs (Frankel 1971): common themes are the role of multinational actors and a focus on expensive technological inputs without support for long-term maintenance.
For photographs of the event, see Sakshi Post (2021).
Oldani (2004, 332) writes about the pharmaceutical industry: “The actual everyday pharmaceutical economy is based on social relationships that are forged and strengthened through repetitive and calculated acts of giving.” Similarly, there is a focus on giving here, or at least on manufacturing the illusion of giving the state an infrastructural gift.
The popular media perpetuate ideas of implants as exceptional. For example, in a review of 190 articles in English-language newspapers about cochlear implant surgery in India, Murthy (2019) found that the surgeons were represented as noble and that the surgery was seen as automatically resulting in “normal” or “close to normal” hearing. And while both the ADIP scheme and state schemes have complex accounting processes that require audiologists and speech and language therapists to upload reports, videos of children speaking, and lesson plans, surgeons are largely exempt from such reporting.
See Cohen (2004, 2011), Copeman (2009), Gupta (2012), and Tarlo (2003).
See Varma (2020) for discussion of state care and violence under occupation in Kashmir.
This focus on objects and not people is not surprising: scholars and disability activists have argued that disabled people are underrepresented in India’s national census, and attempts to quantify how many disabled people live in India have been unsuccessful. See Ali (2020) and Dandona et al. (2019).
Copeman (2009, 108) points to India’s fascination with Guinness World Records and, citing Lal (2002), notes that a tenth of all correspondence that Guinness receives regarding its record book comes from India.
For images of adorable children sitting in “one size fits all” wheelchairs distributed as part of disability camps, see “Disabled Photo Ops,” Latika Roy Memorial Foundation, March 21, 2019, https://latikaroy.org.
Similarly, in its report to the United Nations, the government wrote that one of its accomplishments was the “provision of cochlear implant for 500 children per year with learning disability with a ceiling of 10,000 US Dollar per unit included” (Government of India 2015, 30).
As of October 2021, 7,029 children were registered with the ADIP scheme, and 3,601 cochlear implant surgeries had been performed, according to the ADIP cochlear implant program website, http://adipcochlearimplant.in. Numbers are updated on the site daily. Some 16 percent of ALIMCO’s budget is spent on cochlear implants, a sizable amount considering that only five hundred surgeries are allocated per year, and ALIMCO is responsible for distributing a number of other aids and appliances, from hearing aids to prosthetics to canes to wheelchairs. ALIMCO also runs camps and provides re/habilitation services.
On the concepts of “camp time” “surgical time,” and “project time,” see Appadurai (2001), Cohen (2011), and Whyte (2019).
The Meaningful Auditory Integration Scale is a parent-reported assessment of a child’s attunement to and use of sound through the child’s device(s); the Speech Intelligibility Rating Scale is a patient-reported assessment of how intelligible speech is to the person; the Categories of Auditory Perception Scale tracks what a listener can successfully perceive in a hierarchy of sounds, from environmental noise to speech on a phone call; the Parents’ Evaluation of Aural/Oral Performance of Children is a parent-reported assessment of the effectiveness of hearing aids or cochlear implants based on the child’s behavior and communication through speech and language. Another scale in use is the Integrated Scale of Development, which tracks development in audition, receptive language, expressive language, speech, cognition, and social communication. For information on the assessments used by the ADIP program, see “CAP & ISD Scales” on the ADIP cochlear implant website, http://adipcochlearimplant.in.
The Shravanadosha Mukta Karnataka program shut down in January 2019 because the Karnataka state government argued that it duplicated what was already provided through the ADIP scheme.
2. Becoming Unisensory
See Hall, Hall, and Caselli (2019), Lane, Hoffmeister, and Bahan (1996), and Pfister (2017).
See Bascom (2012), Friedner and Block (2017), Ochs and Solomon (2010), and Sterponi and Shankey (2014).
Croft’s use of “aural” resonates with Sterne’s (2015, 68) point that “the idea of the aural and its decidedly medical inflection is part of the larger historical transformation of sound over the last four hundred years. Aural implies ears that are objects and tools of scientific exploration.” Sterne furthermore notes that “it could be argued that since the mid-nineteenth century, dominant ideas of hearing in science, technology, and medicine retreated further and further into the head, the inner ear, and the brain” (68). Here I critically interrogate such discourses and argue for a return outward as well as an understanding of how these discourses circulate and produce on-the-ground effects in the world.
Max Goldstein, a founder of the Central Institute for the Deaf in the United States, also proposed an acoustic method for working with deaf children, although his method appears more open to tactility. Goldstein (1933, 215) defined the method as follows: “Stimulation or education of the hearing mechanism and its associated sense-organs by sound vibration as applied either by voice or any sonorous instrument.”
These notecards and others referred to below are held in the Helen Hulick Beebe Papers, Penn State University Archives, Eberly Family Special Collections Library, Penn State University Libraries. “Bathing in sound” is a phrase that Doreen Pollack originated; see Pollack (1974).
AG Bell’s mission, as stated on its website (https://www.agbell.org), is “Working globally to ensure that people who are deaf and hard of hearing can hear and talk.” The association, based in Washington, D.C., became an explicitly international organization in 2019.
It is telling that this professional talked about deaf speech and not deaf voice. This brings to mind Weidman’s (2014, 42) decoupling of voice from identity and individuality: “The assumed linking of a voice with an identity or a single person overlooks the fact that speakers may have many different kinds of relationships to their own voices or words or that a single ‘voice’ may in fact be collectively produced.” Weidman goes on: “Voicing emphasizes the strategic and politically charged nature of the way voices are constructed in both formal and everyday performances” (42). Focusing on deaf speech as voice, then, might serve as a necessary corrective and a reminder of the way that deaf speech is interpersonally produced and heard.
The academy’s website states: “The AG Bell Academy is an independently governed, subsidiary corporation of The Alexander Graham Bell Association for the Deaf and Hard of Hearing headquartered in Washington D.C.” (https://agbellacademy.org).
A prominent AVT practitioner and expert trainer told me that the AG Bell Academy renamed and rebranded AVT as “listening and spoken language” because AVT had a negative reputation, owing to the actions of AVT practitioners who have “holier than thou” attitudes and have been known to berate other practitioners for not using AVT. “Listening and spoken language” is seen as more politically and ideologically neutral than AVT.
AG Bell Academy, “Principles of Certified LSLS Auditory-Verbal Therapists (LSLS Cert. AVT),” https://agbellacademy.org.
Rose and Abi-Rached (2013, 15–16) write: “In the age of the plastic brain, many undesirable neurobiological traits appear to be malleable by changing the ways parents deal with vulnerable children.”
Also see Lickliter (2011) for developmental psychology research on intersensory development.
Audiologists and speech and language pathologists speak of generational differences between “older” and “younger” practitioners, noting that because younger therapists work with younger children, better hearing aids, and, increasingly, cochlear implants, they do not develop as great a range of skills or as much ability to work with diverse deaf people as did the professionals who came before them. This contraction of skill range has important impacts for practitioners working in emerging contexts in which newborn hearing screening and the latest technologies are not easily found.
AG Bell (n.d.) offers the following definitions: “The Listening and Spoken Language approach to language development teaches infants and young children with hearing loss to listen and talk with the support of hearing technology such as hearing aids, assistive listening devices (such as an FM system) or cochlear implants.” “Cued Speech is a visual communication system that is used to demonstrate phonetic information for children who may not be able to learn entirely though amplified hearing. Designed to enhance lipreading ability, cued speech combines the natural mouth movements of speech with eight hand shapes (cues) that represent different sounds of speech.” “American Sign Language is a manual communication language taught as a child’s primary language, with English taught as a second language.” “Total Communication (TC) is a philosophy that includes various types of sign (i.e., ASL, Signing Exact English/S.E.E., and contact languages such as Pidgin Sign English or PSE), finger spelling, speech reading, speaking, and the use of amplification.”
See Kral and Sharma (2012), Lomber, Meredith, and Kral (2010), and Sharma, Dorman, and Kral (2005).
One of the therapists who worked for a cochlear implant corporation was concerned about mentoring a colleague who worked for another cochlear implant corporation: she worried that her employer would frown on her mentoring across corporation lines and thus aiding another corporation.
Mattingly (2010, 214) observes that “heroic” characteristics are often associated with surgeons, but not with rehabilitation professionals.
Signing deaf communities in India have also protested the ways that speech therapists work with deaf children and argue that deaf children are treated like parrots, in that they do not learn language or the ability to communicate independently. See, for example, the 2019 online petition titled “Stop Treating Indian Deaf Children as Parrots,” Change.org, https://www.change.org; or the video “Reality of Deaf Education in India,” YouTube, posted June 8, 2018, https://www.youtube.com.
Aruna’s critique of conventional speech therapy resonates with Ochs and Solomon’s (2010, 83) discussion of speech therapy for autistic children: “Most clinical interventions focus on developing severely autistic children’s ability to speak as an endpoint of communicative competence.”
This “mode-switching” has parallels with “code-switching,” in that there is a dominant or preferred mode, and a mode hierarchy still exists. See Auer (1998).
Here one might also consider the robust literature on language socialization (Garrett and Baquedano-López 2002; Ochs and Schieffelin 1984; Schieffelin and Ochs 1986a, 1986b), as children are being socialized into becoming appropriately social members of families and communities through AVT. However, the focused and highly contextualized literal “language games” played in clinics are not easily replicated in daily life and in some cases might be at odds with family communication practices.
The John Tracy Center was started in 1943 by Louise Treadwell Tracy, a mother of a deaf child. The center’s website states: “By encouraging parents to build a foundation of communication with their children during the critical stage for language development, JTC has enabled close to half a million children to master the challenges of listening and spoken language and communicate on par with their hearing peers by the time they reach elementary school.” “Our Story,” John Tracy Center, accessed September 17, 2021, https://www.jtc.org.
As I waited with two therapists in Mumbai for a family to arrive for a session, I asked if they thought that I was auditory. One said that she had observed that I often looked at people’s faces and that she had noticed that the day before, when we rode a train together, I looked at her face when we talked. She said that this demonstrated to her that I was not a fully auditory person and that I relied on visual cues.
Also see Classen (2012) on touch as the deepest sense.
See Moore and Shannon (2009), Pals, Sarampalis, and Başkent (2013), Pals et al. (2020), and Pisoni et al. (2008).
AVT practitioners train deaf children to listen in noise by piping background noise into their therapy sessions, and sound booth–based hearing tests often include components in which background noise is introduced (I experience these as horrible).
Also see Bijsterveld (2008), Mills (2011), and Attali (1985).
See Rhoades et al. (2016, 287) for an overview of criticisms of the hand cue.
See Moore and Shannon (2009), Pals, Sarampalis, and Başkent (2013), Stenfelt and Rönnberg (2009), and Wagner et al. (2016).
Ray Holcomb, an educator of the deaf who was deaf himself, is credited with introducing total communication to deaf education in the 1960s. Holcomb taught classes using total communication in Santa Ana, California, and it was later also introduced in deaf schools, such as the Maryland School for the Deaf (Schlesinger 1986).
I think about doorways through Benjamin Bahan’s (2014) argument about deaf people’s unique sensory orientations. Bahan notes that signing deaf people prefer windows to doors because they can communicate and be social across distance through windows. And there are always glass doors.
Total communication is not without controversy or critique. Johnson, Liddell, and Erting (1989, 4–5) point out that total communication practices often privilege spoken language. De Meulder et al. (2019, 901) stress: “The use of multiple communicative tools is not necessarily something to be valorised in a sweeping movement, when it is an attempt by someone to create meaning from an impoverished set of linguistic tools.” Autistic advocates and researchers with whom I have spoken also point out that total communication can be used as an excuse for limiting engagement or for not teaching language. I share these concerns as well. While I recognize the critiques of total communication as a method, I am interested in what total communication offers as a philosophy or orientation in parsing out hierarchies of language, communication, senses, and modalities.
3. Mothers’ Work
On Indian childhoods, see Kurtz (1992), Minturn and Kapoor (1993), Roland (1989), Seymour (1976, 1983, 1999), Sharma (2000), and Trawick (1990). Note Donner’s (2008, 33–34) comments on the paucity of literature on the effects of economic liberalization on parenting: “This bias against the family, parenting and the domestic sphere also prevails in the literature on globalization and economic liberalization in India, despite a strong interest in middle-class lifestyles.” Also see Tuli and Chaudhary (2010) on “elective interdependence” in middle-class households.
On scaffolding and choreographies of attention, see Cicourel (2013), Tulbert and Goodwin (2011), and Vygotsky (1978). Also see Bucholtz and Hall (2016), Goodwin (2017), and Schieffelin and Ochs (1986a, 1986b) on joint embodiment as a means toward socialization. Intercorporeality, as theorized by Meyer, Streeck, and Jordan (2017), is also relevant here.
See Bosteels, Van Hove, and Vandenbroeck (2012) and Fisher and Goodley (2007) on learning how to become parents of deaf and disabled children, albeit in a more explicitly therapeutic register.
Hart (2014, 290) points out that in the case of autism, many families become “therapy omnivores,” utilizing a number of different therapeutic approaches simultaneously. I similarly observed parents of deaf children visiting a wide range of early intervention centers and therapists.
I am reminded of Kafer’s (2013) analysis of the Ashley X case. Because Ashley’s body was maturing at a rate that her mind never would, she was “out of time,” and her family decided to intervene surgically so that her body would match her mind.
In thinking through this “hard work” and mothers’ engagement with their deaf children, I find Arendt’s (1958) distinctions among labor, work, and action to be productive. Mehanat includes the maintenance of biological life itself (labor); the production of children as students, workers, and citizens (work); and mothers’ acquisition of new forms of expertise as well as their creation of new relationships with other mothers (action). I see the re/habilitative work of mothers—their mehanat—as blurring the boundaries between work, labor, and action, even if certain NGO directors do not agree.
See Connor (2006, 11) on “self-conscious care and management” of the senses.
As Monaghan et al. (2003) point out, there are many ways to be deaf, and similarly there are many ways to be oral and oralist. It is important to analyze the specific logics and motivations driving oralism in context.
According to Beck (1993, 70), dhvani refers to nonlinguistic or prelinguistic sound and is “atomic, all-pervasive, and imperceptible.” Perhaps there should indeed be more focus on dhvani at Balavidyalaya and other institutions like it.
I thank Sravanthi Dasari for her enthusiastic and engaged fieldwork on a trip to and from Pottery Town in 2018.
There were English, Tamil, and Kannada cohorts at the MTC while I was there. I spent most of my time with the English-speaking group, and I heard from others that the Tamil and Kannada groups were often more lively, because the mothers were using their native languages and thus were more talkative and confident.
4. (Non-)Use
While serendipitous for me, the fact that Landon and Deepak shared office space and that Deepak had become Ashreya’s guardian demonstrates the connections among different “disability worlds” (Ginsburg and Rapp 2013) in India.
Note that Deepak did not express concern about other investments—of time and of learning ISL, for example—that he and his family had made in and with Ashreya.
I thank Christine Sargent for this question.
We might think about tinkering in relation to jugaad in Indian contexts. See Rai (2019) for a critical analysis of jugaad and its simultaneous deployment and denigration by multinational capital.
See Hamraie and Fritsch (2019), Hamraie (2017), Hendren (2020), and Williamson (2019).
See Mills (2011) for an analysis of how even implant users with advanced computer science training are unable to tinker with their devices.
“Health Topics: Assistive Technology,” World Health Organization, accessed September 22, 2021, https://www.who.int. The United Nations Convention on the Rights of Persons with Disabilities advocates for state parties to ensure the provision of assistive technology for everyday life (Article 20) and in rehabilitation (Article 26). It also stresses that assistive technology can be a leveler in empowering people with disabilities and that nation-states should share technical and scientific research related to the development of such technology (Article 32). However, as Borg, Larsson, and Östergren (2011, 162) point out, despite this emphasis on the importance of assistive technology, “except for personal mobility, the CRPD seems not to give persons with disabilities the right—or legal support—to approach their government to demand necessary assistive technologies at affordable cost, which for many may be at no or very little cost.”
See Moran-Thomas (2019) and Hamdy (2012) on other forms of maintenance work—in relation to diabetes—in resource-constrained locations.
Kiran’s focus on mundane physical and financial maintenance routines was perhaps out of place in a conference hall where surgeons and the representatives of cochlear implant corporations discussed the benefits of “going bilateral” (implanting both ears), different kinds of electrode insertion, and the eventual creation of cochlear implants that will be fully implanted, with no external processors.
Each of the three major companies uses particular colors as part of its branding: MED-EL uses red and black, Advanced Bionics uses blue and silver, and Cochlear uses black and yellow. At international conferences, representatives of each company are easily identifiable based on their color-coded uniforms. They always remind me of flight attendants, and, coincidentally, they also perform emotional labor similar to that performed by the airline workers that Hochschild (1983) wrote about.
This marketing representative said that most of the cochlear implant industry’s marketing people are women because women are better suited than men to the emotional work required. Also see Oldani (2004) on the relationships established by marketing representatives.
See Salehomoum (2020) for a study on nonuse among cochlear implanted U.S. adults with a range of communication and identification preferences. Salehomoum points out that “individuals who stop using their CI may be small in number, ranging from 1 to 10 percent of the population of recipients, but they add an important dimension to our concept of CI outcome” (1–2).
See Okubo, Takahashi, and Kai (2008, 2441) regarding similar concerns and fears in Japanese parents.
AVT practitioners in the United States often say that, unlike our eyes, which have eyelids, our ears do not have earlids to close them, and as such, typically hearing people hear all the time.
See Marsella et al. (2017), Meister et al. (2016), and Pisoni et al. (2008). I know implant users who choose not to wear their processors at times—especially on weekends and in the evenings—in order to have “peace and quiet” or because their surroundings are “too noisy.” Unlike smaller children, older children and adult implant users can be strategic about what they want to attune to and work to reduce their cognitive loads.
I have occasionally used this guilt-inducing tactic with my family, showing my husband and child the data from the Cochlear app on my iPhone to point out to them that they do not talk to me enough. Interestingly, I logged the most time in speech while I was conducting research for this book!
“Kanso Stories—Vainavi Dassani,” YouTube, posted August 28, 2017, https://www.youtube.com.
“Kanso Stories—Dewanshi Tamudia,” YouTube, posted November 8, 2017, https://www.youtube.com.
Many Indian audiologists and speech and language therapists recommend that families consider purchasing bilateral implants that are lower in cost instead of one Kanso. These professionals argue that a child will get more benefit from two basic processors than from one high-end processor.
“Nucleus CP 802 Sound Processor,” Shravani Speech and Hearing Centre, May 17, 2019, http://www.shravaniclinic.com/latest-update/-shravani-speeh-he/111.
See De Ceulaer et al. (2015) and Mauger et al. (2017).
In an India-based study on quality of life one year postimplantation, Singh, Vahist, and Ariyaratne (2015) found that families noted increased worry about their responsibility to maintain the implant processor. They note: “The crucial need for auditory verbal training and mapping, the need to maintain an external and internal bionic device, the costs associated with paying for initial treatment and later maintaining it for life, raise the question if it will remain an effective option for life, for all who receive it” (62–63). Also see Vaid et al. (2015) and Dutta, Dey, and Malakar (2020) for additional research on cochlear implant maintenance in India and the need to inform and educate families about costs.
A 2005 study found that 60 percent of wheelchair users involved in community-based rehabilitation programs in India stopped using their (donated) wheelchairs because of poor fit, physical strain, and the unsuitability of the wheelchairs for rural environments. In addition, and similar to cochlear implant recipients, wheelchair recipients were not informed in advance about the need for regular maintenance (Mukherjee and Samanta 2005).
During the Covid-19 crisis, Cochlear unveiled a “remote check” app that allows audiologists to troubleshoot processors remotely. This app works only with the latest processors, however, and so the vast number of recipients in India cannot benefit from it.
Alim Chandani, Facebook post, April 28, 2020, https://www.facebook.com/drjahan/videos/10103772676433225.
“Announcing Our First Hearing Ambassador,” Cochlear, August 18, 2015, https://hearandnow.cochlearamericas.com.
5. Becoming Normal
While I do not discuss them here, there are other technologies such as prenatal screening and CRISPR gene editing that have the potential to affect/effect what is possible both in terms of bringing new life into the world and in terms of editing life as it exists. See Garland-Thomson (2012) and Kafer (2013) on prenatal testing and the case for conserving and selecting for disability.
I thank Michaela Appeltova for this insight.
Lloyd and Moreau (2011, 596) note tensions in different definitions of normal and write that “individuals have learned to put their faith in medicine and medical practices in order to have their bodies and behaviors normalized, but on the other hand they continually run up against the fact that clinicians are ultimately concerned with normality, that is, symptom reduction and not normativity or a normal day-to-day life.” They point out that ideas of re/habilitated normal lives are often “part of a larger project of self-improvement via social, personal, and professional normalization in its most idealized form.” As I discuss in this chapter as well, normality does and does not map onto, and is often a larger life project than, successful medical outcomes.
See Erevelles (2011, 28) for a critical take on becoming-disabled that calls for an analysis of the roles of differential histories, material access, and power dynamics.
Kafer (2013), Mialet (2012), and Wolf-Meyer (2020) call our attention to the ways in which qualities such as autonomy and independence are distributed and to the ways in which disabled people exist within interdependent relationships.
This IEP goal is perhaps why I am so shitty when it comes to budgeting and saving money.
But see Samuels (2003) for a critique of how the analytic of passing depends on disability being visible; also see Wendell (1996).
Brune et al. (2014) curated an excellent critical and engaged forum examining Goffman’s impact on and legacy in disability studies on the fiftieth anniversary of the publication of Goffman’s Stigma.
See Plemons (2017, 91) on how attending to a binary of “pass/no pass” obscures important questions about what specific self-making projects do on the ground.
I thank Matthew Wolf-Meyer for directing me toward the molecular and the molar.
Scholars have critiqued disability-as-identity and called for other categories, such as debility (Livingston 2005; Puar 2017) and crip (Kafer 2013; McRuer 2006; Sandahl 2003). In her research on chronicity, Wendell (2001) critiques celebratory identity-based models, as do Soldatic and Grech (2014) in their call for a return to the concept of impairment. Deaf studies scholars and deaf anthropologists have moved away from ideas of deaf identity and community to consider deaf networks, spaces, and worlds (Friedner and Kusters 2020).
The question of how audiological and diagnostic labels map onto identity categories has been taken up by anthropologists and deaf studies scholars (Friedner 2010; Kusters, De Meulder, and O’Brien 2017) and resonates with discussions of the “many ways to be deaf” (Monaghan et al. 2003), although most of this work does not attend to questions of diagnosis and the specificities of degrees of hearing loss.
In fall 2019, I participated in a podcast for a Chicago-based early intervention center during which two deaf education professionals and I collectively wondered what to call implanted children. The consensus was to let the children and their families decide for themselves.
Full disclosure: I have been called “mentally hearing” by ASL speakers at various points in my life.
This is the “precarious plasticity” that Mauldin (2016, 131) writes about, under which “the ‘wrong’ stimulus (visual language) could derail [the brain’s synaptic connections], and thus parents are told not to use sign for fear of causing their child (future) neural harm.”
I thank Eric Plemons for pointing out the pluripotency of potentiality.
I observed class-based distinctions in what families were told about their children’s diagnoses in terms of the brain versus the ears. Audiologists and speech and language pathologists told me that lower-class families would not understand “brain talk” because “it is too abstract” and “they can’t see the brain or understand what is happening inside”; these professionals thus privileged visuality in a different domain.
This discourse around lateness has resonance with postcolonial scholarship on teleologies of progress (Chakrabarty 2008). However, instead of sitting in a “waiting room,” these children are sitting at home without any intervention, according to professionals, who have a particular view of what intervention is. Professionals hope that families will come to a (clinic’s) waiting room. And note that the “late-implanted child” occupies a particularly vexed position in cochlear implant and neuroscience research (Boons et al. 2012; Fitzpatrick, Ham, and Whittingham 2015; Holt and Svirsky 2008), as does the “late signer” in sign language and neuroscience research (Hall 2017; Mayberry 1993; Mayberry and Eichen 1991).
While Indian therapists often focus on the fact that implanted deaf children have normal brains and normal hearing, many told me that increasingly they discover that implanted children have other disabilities, specifically intellectual disabilities, that make it difficult for them to process what they are hearing. In India, awareness of intellectual disabilities is growing, as are allied medical fields and diagnostic tools. Therapists exhibit a classist nostalgic bent in referring to the “good old days” when deaf children were seemingly less complicated and implanted children came from “good” families. These learning disabilities and class issues, according to therapists, block children from harnessing the full potential of their implants.
The surgeon, according to the family, was eager to implant Imran and pressured them through phone calls. As I discuss in chapter 1, surgeons are often concerned with increasing the numbers of surgeries that they do. My understanding is that this family encountered the surgeon early in his career, while he was trying to grow his practice.
Imran’s mother constantly said that she was doing everything possible. However, as I note in chapter 3, she was often criticized by program administrators for not doing enough. According to this line of critique, she was considered not plastic enough and not capable of being molded into an ideal (therapeutically talking) mother.
The Indian Administrative Service is one of the highest-level civil service posts in India.
I thank Carsten Mildner for discussions about “deafening” and for introducing me to this way of thinking about “becoming deaf.”
See Sunder Rajan (2017) on access to pharmaceuticals and the intersections of pharmaceutical development, patent law, statecraft, and citizen activism.
See Finlay and Molano-Fisher (2008) on feelings of loss and disorientation postimplantation.
Gender is important. As noted in chapter 1, the central government had wanted its first cochlear implant beneficiary to be a girl. In interviews and discussions, I did not see families eschewing implanting girls, although I met a father who declined to implant his daughter because she would ultimately be given away to another family in marriage, and he could not ensure that her new family would maintain her implant. In another situation, I learned about a young woman who was implanted and then immediately married. After marriage, she had to focus on marital and household duties and did not attend therapy; her hearing and speech did not improve. In still another case, however, I was told that implantation could increase a young woman’s marriageability if she could listen, talk, and hear a baby crying.
Robinson (1994, 715) writes that passing is often a triangular process, with an “in-group clairvoyant” who is able to recognize the pass. In this case, the “in-group” was made up of surgeons, audiologists, and speech and language pathologists, and not other deaf people. Indeed, I often depend on hearing people to tell me whether someone has “deaf speech” or a “deaf accent.”
Conclusion
Helen Beebe, one of the founders of auditory verbal therapy, wrote on a notecard in the 1980s: “Difference between 1890 or 1930 is that now we have the electronic technique to make all waking hours a participation in hearing world.” Beebe was referring to hearing aids. Fast forward to the 2020s, when cochlear implants are considered a standard intervention. What a difference forty years makes.
See Lewkowicz and Kraebel (2004), Lewkowicz and Lickliter ([1994] 2013), Lickliter (2011), and Murray et al. (2016). On multisensory perception and cochlear implantation, see Rouger et al. (2007) and Stevenson et al. (2017).
I thank Stephanie Lloyd for introducing me to the importance of “becoming with.”
I am reminded of McRuer’s critique of the often-uttered platitude that sooner or later we will all become disabled. McRuer (2006, 198), building on Garland-Thomson’s (1997) concept of the normate, writes: “Sooner or later, if we all live long enough, we will become normate.” He urges us to resist becoming normate. By “normate,” Garland-Thomson (1997, 8) means “the constructed identity of those, who by way of bodily configurations and cultural capital they assume, can step into a position of authority and wield the power it grants them.” Writing more than fifteen years later, McRuer anticipates a different future that includes the assimilation of disability within neoliberal political economic regimes. This future perhaps also includes the proliferation of bionic devices, such as cochlear implants, that enable the creation of normative capacities.
On DeafSpace, see Bauman (2014), Edwards (2018), and Edwards and Harold (2014).
Relatedly, Edwards (2018, 286) discusses DeafBlind efforts at Gallaudet University and elsewhere to “re-channel” language and environment, approaching infrastructure as playing a significant role: “DeafBlind people at Gallaudet treated the material environment and modifications to it as capable of facilitating or inhibiting residence.” Infrastructure is thus essential for DeafBlind becoming, specifically for becoming a tactile person oriented toward touch as a meaningful mode of engagement with the world.
I thank Mara Mills and Annelies Kusters for pointing out this erasure of oralism, lipreading, and hearing aids in the service of a new binary in which cochlear implants loom large as the “only option.”
On disability, capital, and value, see Friedner (2015), Fritsch (2013, 2015), and Mitchell and Snyder (2010, 2015).
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