Essay by Matthew Davis
Tools of perception: technology, culture, language and resilience.
A year after Will Mellon was born, his mother, Nancy, took him on a walk through their bucolic Silver Spring, Maryland neighborhood. A dog bolted towards them from a neighbor’s front yard, barking loudly. The dog startled Nancy, but Will didn’t notice it. His gaze stayed fixed, straight ahead. Decades later, Nancy remembers that moment, frozen out of time. The first year of her fourth child’s life came into focus: why Will wasn’t babbling; why he wasn’t soothed by singing unless pressed close to the chest; why Will, despite his deep expressiveness and obvious intelligence, hadn’t attempted to communicate verbally. Will was deaf, and the realization hit Nancy like a death in the family.
Nancy didn’t linger over her realization. She immediately called Will’s pediatrician, who suggested Nancy bring Will to Children’s Hospital to check his hearing. In the waiting room, Nancy saw a young boy about five years old being fitted with hearing aids. She burst into tears. “Obviously I knew on some level, but I hadn’t quite processed it yet,” she said. The boy “was very cute but he looked different. And you don’t want your kid to be different.”1
The testing booth was full of stuffed animals and contained a train track. Nancy positioned Will on her lap. They watched the train whistle and hoot and flash bright lights to indicate its approach. A child with normal hearing and visual capacities would register both the lights and the sound. “He’s looking right, left, right, left,” Nancy recalls. After a couple of spins around the track, the train’s lights turned off. “Suddenly, really loud sounds, no reaction.”
She called her husband, and they sat on a bench in their neighborhood. They discussed the obvious questions: What were they going to do? How were they going to educate Will? What will he be like? Soon after Will’s diagnosis, officials from Montgomery County, Maryland, showed up at Nancy’s door to offer some solutions. A county audiologist and special educator for the deaf helped them learn about the biology of deafness and offered options to engage Will with language. Nancy learned about audiograms, the graphs that measure the ear’s ability to register volume and pitch. Will’s audiogram showed that he couldn’t hear a jet plane fly overhead. This lead to an important conversation about language acquisition. At a year old, Will was behind in language formation. The educator presented Nancy, who was already taking primary control of her son’s educational decisions, with Will’s options.
The educator explained the differences between American Sign Language (ASL), cued speech, and oral communication, each of these incomplete in some fundamental way. Oral communication (reading lips and producing sounds) and cued speech—a form of communication that uses mouth and hand movements—both pushed the deaf child, Will, to engage with a hearing world when his world was silent. American Sign Language required Nancy and her entire family to learn a second language to adequately communicate with Will. In order for her to better understand these options, Montgomery County invited Nancy to panel discussions where students who had been taught in these various methods explained their experiences. When Nancy attended, the only panelist was a man who had learned to communicate in ASL. As he signed through an interpreter, he told a painful story that struck Nancy’s core. “He spent the whole time telling us how much he hated his parents because they never learned how to sign. They didn’t know how to communicate with him, and they sent him to this boarding school and was not part of his family.” She laughed a bit. “So you can imagine, as a parent, where you go like, ‘Yikes!’”
Though Will and his family had already begun taking ASL classes, Nancy feared she couldn’t learn enough, fast enough, to communicate with Will as his language skills developed. It was at this time that the test administrators offered Nancy a fourth option. Though Will was profoundly deaf, the rest of his skills—motor, psychological, attentiveness—were so strong that he was the perfect candidate for a cochlear implant.
Cochlear implants bypass the structure of a non-functioning ear and directly stimulate the hearing nerve that travels to the brain. Will Mellon was born on February 4, 1992. Just three years prior, the Federal Drug Administration (FDA) had approved commercial use of this new technology for children as young as two.2 The leading center for cochlear implant surgery in the United States was at Johns Hopkins Hospital in Baltimore, a short drive from Nancy’s home in Silver Spring. Implants are given to deaf adults, but they are at their most effective when given to children, as it allows them the opportunity to hear sounds and language in the critical period of language development. Of course, receiving an implant as a child also means that the child has no say in the decision. The Mellons clearly wanted what was best for their son, but it was difficult to determine what this was.
As is true of many decisions parents make, the decisions Nancy made now would shape the contours of Will’s life. She felt the weight of the decisions that would structure his experience in the world: his relationship to sound, his relationship to technology, and his relationships with other human beings. She was uncertain whether or not it made sense to artificially enhance Will’s ability to hear, but she also wanted him to join her in the hearing world.
What are the practical costs of relying on technology and software to perform the basic human function of hearing? But beyond this question is another, more textured question that all deaf Americans and their families ask: What are the implications of this technology on identity and language? Are cochlear implants a resilient response to deafness? Nancy came to one set of conclusions about these questions; other parents of deaf children, whom we will meet later in this essay, came to different ones.
Humans have had trouble hearing ever since our origins as a species. Thoughts on the causes of deafness and possible solutions have been around almost as long. The most common remedy for hearing loss throughout history has been to stick things—objects, animals, liquids—in the ear. Ancient Egyptians stuffed ant eggs, bat wings, and goat urine in the ear in attempts to stimulate hearing.3 The Roman doctor Celsus believed deafness was caused by bilious bowels and so proscribed remedies to flush out bilious stool.4 Before the advent of electricity, the most common method to amplify hearing were ear trumpets, conically shaped objects designed to capture sound and funnel it into the ear.5
The dawn of the electric era brought electrical solutions to ancient problems. Benjamin Wilson, for example, a British painter and natural philosopher, used an electric current to stimulate a woman’s profound hearing loss in 1748. (She reported “warmth and a strange twitching” and hearing improvement).6 In 1800, Alessandro Volta, an Italian physicist, used a battery (which he had invented) to send a 50 volt electrical charge to his own ears, an experience he described as a “crackling with shocks, as if some paste or tenacious matter had been boiling.”7
Though there were a few attempts at aural electrical stimulation from Volta’s crackling experience to the mid-20th century, scientists became less interested in shocking the ear itself, but rather grew interested in electronically stimulating nerves to trigger the brain’s auditory functions.8 To do so requires a device that can be implanted in the ear, which is a tricky requirement given the ear’s construction.
The ear is divided into three parts, each of which is integral to hearing: the outer ear, the middle ear, and the inner ear.9 The outer ear, or pinna, is the part we all see, the curly cartilage at the sides of our heads that funnels sound into the middle ear. The middle ear is simply an air cavity that transmits sound from the pinna towards the tympanic membrane, more commonly known as the eardrum. The eardrum amplifies these vibrations and transmits them to the cochlea of the inner ear. The cochlea is a spiral-shaped cavity whose contours look like a snail shell. It is made of thin bone and delicate tissue. It contains three fluid-filled cavities and the organ of Corti, which is lined with rows of thousands of hair cells. At the organ of Corti, sound waves that have traveled from the pinna, through the middle ear cavity and into the cochlea stimulate those hair cells, whose vibrations relay patterns to the auditory nerve, which then relays these vibrations to the auditory brainstem. Imagine wind rustling leaves on a tree. The stronger the wind, the more the leaves rustle. So, too, with the hair cells—the louder the sound, the more the hair rustles and the stronger the impulse to the auditory nerve. Most profound hearing loss is a result of damage to or an absence of those hair cells.
Initial attempts to electrically stimulate hearing were focused not on the cochlea but on different nerves in both the brain and middle ear. For example, scientists in France in the 1950s first stimulated the vestibulocochlear nerve at the brainstem.10 In the next decade, William House, an American otologist, and John Doyle, a neurosurgeon, first successfully implanted a single-wire electrode to the lower portion of the cochlea.11 It was easy to place a single-channel electrode (one that allowed humans to hear in one tone) on the inner ear. It was much more complicated to get it in the cochlea to replicate the tones, scales and frequencies of a healthy, functioning ear. The challenge was how to thread wires through the tightly-wound cochlea without scraping against the delicate interior.
The answer came to Graeme Clark, an Australian surgeon leading that country’s efforts at cochlear implantation, via a walk on the beach.12 Clark picked up a spiral shell, stared at it, and inserted a blade of grass through its body. The grass was of the kind that is thick at one end, but flexible at the other. It could easily bend and contort while maintaining its firmness and gave Clark an engineering solution to the problem of which kind of wires to use. With this “discovery,” Clark helped usher in the multi-channel cochlear implant, an array of electrodes implanted in the cochlea that electronically stimulates healthy nerve endings when a battery-operated amplifier placed on the outside of the head receives sound. In 1978, Clark became the first surgeon to successfully insert a multi-channel cochlear implant on a human being. The device became known as Cochlear/Nucleus.
Soon after, in 1984, the Food and Drug Administration (FDA) approved commercial cochlear implants for Americans over the age of 18. Five years later, the FDA approved cochlear-implant surgery in children two years and older.13 Some hailed the implant as a life-altering solution to ancient problems—for the first time in human history, it gave hearing to the deaf. But not everyone who was deaf wanted to hear.
On February 26, 1994, just after Will Mellon’s second birthday, Nancy Mellon drove through a blizzard to bring Will to John Hopkins for the first step of his cochlear implant surgery. Cochlear implantation is a two-step process. The first step is the invasive part, which occurred that February morning. Under general anesthesia, surgeons cut through Will’s mastoid bone, creating an opening between his facial nerves and the cochlea. Then, they opened his cochlea in order to line it with electrodes. On the way out, a surgeon placed an electrical receiver on the skull, about the size of a nickel, just under the skin behind Will’s toddler ear, and sewed him up.
Will went home and recovered, allowing the incisions and wounds to heal. He returned to Johns Hopkins Hospital for step two of the implantation process a month later. Cochlear implants typically bypass the visible parts of the ear.14 A microphone is tucked behind the ear, and connected to a speech processor and transmitter that are, likewise, outside the skull. The transmitter sends a radio signal a short distance through the skull to a receiver that has been placed just opposite it, inside the skull. The receiver in turn transmits those signals, electrically, to the auditory nerve. The processor is the key to cochlear implantation. It runs software that is programmed—or mapped, in the terminology of cochlear implants—for specific individual use. In other words, each person’s processor software is tuned differently, in order to best correlate the electrical stimulation of the auditory nerve with sounds in the outside world.15
Will Mellon was snug on his mother’s lap when his cochlear implants were first turned on. The moment he first heard the world has been captured on video: you can see him cry, first from the unfamiliarity of sound, and then he cries from hearing his own cries, his tears, then, like all babies born into the world, one of the first sounds he heard.
Nancy remembers driving home from Will’s activation, getting out of the car, and having her two-year-old son suddenly look up at the sky. A helicopter whirred overhead. After Will’s implant and activation, he frequently returned to Johns Hopkins for speech therapy and attended a local parent-infant school program. That September, though, it was time for Will to attend school, and Nancy did not like any of the options that were laid out to her by Montgomery County. She first had to choose how to teach her son—through oral education, ASL or cued speech. It wasn’t simply that deaf children were segregated in these three classrooms according to language: they were segregated by school. Those who were educated in ASL went to one school, and those who were educated in cued speech went to another. Nancy had engaged Will in all three forms of communication. She didn’t want to have to choose one route to educate her son. She looked for alternatives and eventually found the National Child Research Center (NCRC), a Washington, D.C. preschool where children with special needs attend school with “normal” children.16
Will was one of three special-needs kids in his classroom. Nancy saw right away that it was vital for him to interact with a wide range of peers. Children, she realized, didn’t care so much about language. They cared about how well you played—whether on the playground or in the classroom, a realization that was to have far-reaching consequences on her and Will’s lives.
Language is the heart of this story. Deaf education, deaf culture, and deaf identity—like all education, culture, and identities—are shaped by language. In the United States, deaf culture can be said to have started on a May afternoon in 1814, when Thomas Hopkins Gallaudet, a Christian pastor, stumbled across a young girl named Alice Cogswell just outside Hartford, Connecticut.17 As Gallaudet attempted to communicate with young Alice, he realized she was deaf. He was not. This meant that not only could he not communicate with her, but he feared she had no access to the Word of God. Following this chance encounter, Gallaudet made it his life’s mission to find a way to educate the deaf, a search that took him to France, where he met a deaf man named Laurent Clerc. Clerc taught his deaf pupils using hand signs and signals, and Gallaudet became convinced teaching the deaf through sign was the most effective way of educating them. He persuaded the young Frenchman to join him in the United States to establish a school for the deaf, and on their voyage back across the ocean to America, Clerc taught Gallaudet sign language. In 1817, the two men founded the American School for the Deaf in Hartford, Connecticut, the first school for the deaf in the United States, and a school whose pedagogical imprint was on teaching deaf pupils through sign language.18
Forty years later, in 1856, Amos Kendall, a postmaster general for the United States, donated two acres of land just outside the boundaries of Northeast Washington, D.C. to educate 12 deaf and six blind children. The following year, Kendall persuaded Congress to incorporate the new school, which was called the Columbia Institute for the Deaf, Dumb and Blind. It was a small school for primary and secondary education that was soon granted a collegiate charter signed by Abraham Lincoln in 1864. Thomas Hopkins Gallaudet’s son, Edward Minor, was tasked with running this new college for the deaf, and like his father, Edward Minor ascribed to a teaching methodology that focused on educating the deaf through sign language. Yet in the late 19th century, educating the deaf through sign language was on the margins of deaf education. Instead, oral education took precedence, a form of learning that forced the deaf to read lips and attempt to create and pronounce sounds they could not hear.19
The Columbia Institute was distinctive in its continued adherence to teaching deaf pupils in sign, rather than through voice. In 1894 the higher-education part of it was renamed Gallaudet College in honor of Thomas Hopkins Gallaudet. (By act of Congress, Gallaudet would become a university in 1986.) The school grew slowly over the course of the early 20th century. Despite this modest growth, Gallaudet was still an outlier in deaf education. Most schools, both in the United States and abroad, taught deaf pupils orally, forcing the deaf into a hearing world. That was about to change.
William Stokoe arrived at Gallaudet’s English Department in 1955. Stokoe was a linguist and a hearing man, and he began filming students and teachers as they communicated to one another in sign language. As he watched the film, he began to notice grammatical patterns similar to those in spoken languages. In 1960, he published a paper that established sign language as a language, and not just a collection of hand signals.20 Sign language in the United States was renamed American Sign Language (ASL). Its recognition came at a crucial time for deaf Americans. As the civil rights movement swept across the United States, many in the deaf community rallied around ASL. They became increasingly proud of deaf culture, finding in it a unique language, history, and poetry. Many at Gallaudet and beyond began to reconceive of deafness not as a disability but as an identity. This deaf-pride movement gathered steam and culminated in the March, 1988 protests at Gallaudet called Deaf President Now.
Gallaudet’s President had stepped down in August 1987, and the university’s Board of Trustees was considering candidates to replace him. As the world’s only university for the deaf and hard-of-hearing, most everyone at Gallaudet—students, alums, and the affiliated deaf community—felt the time had come for the school’s first deaf leader. Of the three finalists for the position, two were deaf. Nevertheless, in early March, the Gallaudet Board of Directors chose the hearing candidate, Elisabeth Zinser, as president.
Over a thousand people had gathered at the Gallaudet gymnasium to learn the Board’s selection. They were furious at the decision. An impromptu march was led to the upscale Mayflower Hotel, in downtown Washington, D.C., three miles from campus, where the Board had met and was then conducting a press conference. That march to the hotel was the start of Deaf President Now, a week-long series of protests on Gallaudet’s campus, in which students locked the campus gates and blockaded them with parked cars and buses.
The students demanded four things from the administration: The resignation of Zinser and the hiring of a deaf president; the resignation of the Chair of the Board of Directors; a change in the Board’s composition so that 51 percent of its members were deaf; and no recriminations for the students who were leading the protests. National media took note, and student leader Greg Hlibok, Academy Award winner and deaf actress Marlee Matlin, and Zinser appeared as guests on Ted Koppel’s Nightline. For the first time, the United States saw the deaf as their own actors and agents, a culture with its own demands offered in its own language. This attention helped make DPN an unqualified success. All four student demands were met.21
The protests, though had outgrown Gallaudet. They sparked a public disability rights movement that spurred the 1990 passage of the Americans with Disabilities Act22, the last great piece of civil rights legislation Congress has passed. The ADA codified discrimination protection against Americans with disabilities in key sectors such as employment, public access and education.
But even as the politics of deafness were changing, so too was the technology. The FDA approved cochlear implantation in children in 1989. At the height of deaf political strength and identity, then, came this surgery that could “correct” deafness. The blowback was intense. In 1991, the National Association of the Deaf deplored cochlear implant surgery for children, claiming that the risks have not yet been scientifically established.23 Some in the deaf community called the surgery “genocide” because of its threat to the vibrant culture of the deaf that had its identity attached to the use of American Sign Language.24 When Nancy Mellon decided to implant her son Will in early 1994, she was doing what she believed was best for him. She had no idea she was entering a debate about identity, humanity and how technology impacts our lives.
Sean Maiwald was born in San Jose, California on the exact same day that, across the country, Will Mellon got his cochlear implant in a blizzard-bound Baltimore hospital. Sean is Ginny Maiwald’s second child. Throughout Ginny’s pregnancy, her young daughter, Megan, pleaded with her for one thing: a baby with hearing aids. Though Ginny didn’t want to disappoint her daughter, she did not share her aspirations. One deaf child was enough. Ginny thought the likelihood of her second also being deaf rather remote.
In the two years from Will’s birth to Sean’s, the National Institutes of Health had suggested that newborn infants have their hearing tested. The screening is quick and noninvasive. It is generally conducted while newborns sleep. There are two types of tests. One is called an “Automated Auditory Brainstem Response,” which measures the vestibulocochlear nerve’s response to sound. (Also known as the auditory nerve, this is the nerve primarily responsible for transmitting information about sound from the inner ear to the brain.) The second test is an otoacoustic emissions (OAE) test, which measures echoes in a baby’s inner ear after the testing device emits clicks or tones. Sean’s test, done 10 days after he was born, revealed a surprising result. Sean, too, was deaf. “I was shocked,” Ginny said. “I was numb. Megan was thrilled. So I thought, my God, take some wisdom from a 4-year-old.”25
Like Will, Sean’s motor skills made him a good candidate for cochlear implants, but unlike Nancy, Ginny did not want to move forward with the surgery. “Several doctors would have done it in a heartbeat,” she said. “I listened, but it’s like changing the color of their skin. What would a cochlear implant bring? How are they going to benefit? I was like, ‘I’ve done this before. I’m going to embrace it.’”
In his 2005 book “Rebuilt,” author and adult cochlear-implant recipient Michael Chorost writes: “The word cyborg is often applied to anyone with an artificial body part, but that’s just plain wrong.”26 He goes on to argue that technologies such as eyeglasses, immunizations, artificial knees, and cell phones do not make humans into cyborgs. “The essence of cyborgness is the presence of software that makes if-then-else decisions and acts on the body to carry them out,” he writes. In this category, he lists two items: pacemakers and cochlear implants.
Just as hearing—and trouble hearing—have been around since humans roamed the earth, so too have technologies that make our lives easier and more complete. Shovels, cars, computers—they are all technological tools. Are cochlear implants fundamentally different from hearing aids or glasses? Are they, as Chorost argues, the merging of man and machine? Or are they another item in a long list of tools from the wheel onwards? What does the answer to this question mean in relation to resiliency and human dependence on technology?
Like many tools, cochlear implants are consistently upgraded. Just as a new model of car is around the corner, so is a new model of cochlear implant processor. Like any tool, there are potential complications or breakdowns: surgery can cause infection; some people may struggle to adapt to new sound; and, the most common defect with cochlear implants, batteries may run out and need replacement.27 But as a form of technology, cochlear implants are incredibly reliable. The surgery is, at this point, rather minor, and the implants inside the body need replacing on only the rarest of occasions. Though the parts outside the body—the microphone, processor and transmitter—may break, the software and mapping are stored on an audiologist’s computer and can be easily reprogrammed into a new processor. In this sense, the implant can never “break.” Even if a processor were totally destroyed, a new one could be programmed. As Chorost writes: “The progress happens not just between one generation of implants and the next, but also between new generations of software loaded into a single person’s implant. Such advances are the hope of every person with a cochlear implant: that however well they hear now, new software and faster processors will someday enable them to hear better.”28
In this sense, deaf humans who use cochlear implants are no different than car enthusiasts who await the newest Tesla model. The difference, of course, is that cars are not uploaded into the body. Even the most avid of drivers take breaks from their cars or could live—if forced to—without them. Perhaps some of us secretly wish the electrical grid would collapse so that the Internet would disappear and provide us with a moment of peace; we’re reliant on technology, though perhaps not dependent. People with cochlear implants, however, don’t have this luxury. They are entirely reliant on technology to perform one of our most basic senses—hearing. Even those of us with glasses possess gradations of sight loss, not total blindness. This puts users of cochlear implants unusually high on the scale of tech dependence, perhaps imbuing them with that cyborg quality Chorost wrote about (if the grid fell, those with pacemakers would also suffer, for example) and lessening their resilience in an unconnected world.
This is one reason why the deaf world cringed at cochlear implants when they were first introduced and why some are still bothered by them. Whether you use a cochlear implant or not, you are still deaf. Another reason is that around 40 percent of cochlear implants are placed in children. Neither Will Mellon nor Sean Maiwald had any say in the decision as to whether or not to receive a cochlear implant. The case for implanting invasive devices at an early age boils down to the fact that language acquisition and development in the first years of life is conspicuously important. If the capacity for language is not cultivated during those years, it will generally be a struggle for a person to learn language, any language, whether spoken, written, or signed. Is it, then, a dereliction of parental duty to not implant a deaf child? Should the state mandate implantation of children who cannot hear? Should it pay for the procedure?
Ginny Maiwald worked as a bilingual instructor in the California school system. She put her expertise to work in service of Sean’s education and language development. She signed with Sean, fitted him with hearing aids, and sent him to deaf schools through kindergarten. It was then she had to make a decision: whether to send Sean to the California School for the Deaf (CSD) in Fremont or to send him to the neighborhood school. She kept him home, both because she didn’t want to send him to boarding school and because she wanted him to be integrated into the hearing world.
Sean was exceptionally bright and loved to read. By the time he entered first grade, he was already reading at a fifth grade level. In his mainstream schools, he received teaching both orally and through ASL, something Ginny demanded for her deaf child. “It’s AND,” she says, “a lot of people say it’s OR. I say AND.” As a teacher familiar with the holes in the public school system, she followed Sean through school, taking a job as principal of his middle school and then of his high school. Ginny also took notes, and eventually wrote a book called Keys to Raising a Deaf Child that is a memoir of her experience raising two deaf children, but especially about raising Sean.29 In it, she stresses an holistic approach to language where children receive exposure to multiple forms of communication and the simple fact that deaf children aren’t all that different from hearing children.
Like most of us, Sean has forgotten the details of many days spent in classrooms as a kid.30 He was in a classroom with hearing kids and a couple of other deaf children. There was always one interpreter who helped him in ASL when his hearing aids couldn’t or didn’t catch the material. He remembers the hearing aids, though—loud, noisy contraptions that he found annoying. Once, at the behest of his sister, he flushed them down the toilet, and he would often lose them when he took them off. His mother devised a strategy where she attached straps to the hearing aids and clipped them to the back of his shirt, so when he took them off they dangled in the air like worms.
When Sean went off to college, Ginny Maiwald felt she had raised a child that could both sign beautifully and communicate orally. And she had. There was just one issue—Sean never felt a sense of himself, a firm identity. Because he was missing things in social situations, it was hard for him to keep up with group conversation and make friends. As Sean once put it: “Who doesn’t want to make friends?” He could communicate orally, but he never really felt that he belonged in the hearing world.
Even though he had gone to mainstream schools for most of his education, Sean decided to attend Gallaudet University. In college, Sean found a part of himself that had been missing throughout his early years. He could remove his hearing aids and sign for days without putting them back on. When he left Gallaudet’s gates for internships or shopping, he could easily place them back behind his ears and re-enter the hearing world. Sean also found a sense of mission. He became an opinion writer for the Buff and Blue, the school newspaper, and is now studying public policy in graduate school. He hopes to be a proponent for deaf culture, working to convince parents not to put cochlear implants in deaf children who are too young to understand the procedure or to consent to it.
Across the country, while Ginny was bringing up Sean, Nancy Mellon was learning some of the same lessons in a different form. Nancy was a relentless communicator to her son in all forms of language—ASL, speech, cued speech. Like many children who receive cochlear implants, Will struggled initially. For two years after surgery, Will didn’t test well in language production or reception. Some doctors suggested Nancy was doing too much with him, but she stuck to her multiple-language approach. Eventually, by the third year after Will’s implant, things began to click. With his progress through the land of verbal language and sound, Will dropped sign and cued speech and began to communicate solely with the help of his cochlear implant. It was like a radio signal emerging into focus from a staticky, noisy background.
Will still traveled to Johns Hopkins to receive speech therapy. Will remembers those car rides, where he would read Dr. Seuss or Go Dog Go, and he remembers always receiving an oatmeal raisin cookie whenever his sessions ended.31 Yet he doesn’t remember any issues associated with his difference. He didn’t think much about being deaf. He was only reminded of his cochlear implants occasionally, if he caught someone staring at him in public, or if the batteries in his implants ran out and needed to be replaced.
As cochlear implantation technology evolved, so too, did the strength of the processors in his implants. “When I changed from an old processer to a new one,” Will once told me, “it would be a huge shift, and I hated it at first, because it was like, ‘This is so different. This is not what it sounded like for the last year or two. That’s not what mom sounds like. That’s not what dad sounds like. That’s not what things are supposed to sound like.’ But the brain is amazing, and a week or two later, I was like, ‘Well, this is how it always sounded.’”
Like Sean, Will was a great student and a voracious reader. His only tough time, he says, was during middle school, when he was bullied. If not for the cochlear implants that reside on his head, you would not know he had any deafness. His speech is fluid and laced with humor, self-awareness and intelligence, and he has little to no contact with the larger deaf community. He recently graduated from Skidmore College.
Like Ginny Maiwald, Nancy Mellon became directly involved in the education of not just her son, but in that of students and children like her son. She began to work with Johns Hopkins and the surgeon who had performed Will’s surgery. She knew from personal experience how much support—both emotional and informational—was needed for parents with deaf children who were considering cochlear implants, and she started a parent support group at Hopkins. She began to raise money to help educate parents and educators on the still-nascent technology, the needs of children who receive an implant, and how best to educate those children.
This journey eventually led her to found a school for children ages 18 months to third grade. The River School, in Northwest, Washington, D.C., a close drive from Gallaudet, enrolls 200 students, some of whom have cochlear implants, most of whom do not. It is a direct result of Nancy’s experiences with Will’s deafness, her decision to give him a cochlear implant, and the educational environment Will learned best in—a classroom with hearing peers. Each classroom is co-taught taught by a teacher and a speech language pathologist, and the school has audiologists and psychologists on site. The River School is the only one of its kind in the world, though Nancy hopes other schools around the United States will open that embrace the inclusivity that was so vital for Will and that is at the core of the school she founded. Will now works there as a research and clinical assistant in the audiology department.
In the United States, of every 1,000 children born, between two and three of them come into the world with significant hearing loss. There is a growing trend towards cochlear implantation. In 2005, 30 percent of profoundly deaf children born in the United States received a cochlear implant. Five years later, that rose to 40 percent.32 Cochlear implantation remains an expensive procedure. Today, with the surgery and the rehabilitation needed to make the surgery successful, the total cost of the procedure can be as much as $60,000. Though many health insurance programs cover much of this cost, the price tag and insurance policies obviously favor the surgery for wealthy families. However, by comparison, educating and outfitting a deaf child without an implant may cost as much as a million dollars over a child’s lifetime, a cost that is more prohibitive but spread out over years.33 But these costs don’t reflect the emotional resources and stamina needed to help a child learn language and speech from scratch, regardless of whether a family decides to cochlear implant their child, learn American Sign Language, or provide a combination of language options, as Nancy and Ginny did.
A deaf infant requires multiple resiliencies, not just an individual resilience. There is a familial resilience involving not just the newborn but also his or her parents and siblings. There is also a community resilience. Gallaudet University in Washington, D.C. has been a home to the deaf and hard-of-hearing for over 150 years. It is the epicenter of the worldwide deaf community—the president of Gallaudet is not just a president of a university, but of a 340 million-strong deaf “country” around the world. Few universities can claim to have reified the existence of a new language, as Gallaudet did with ASL. There is indisputably great value to be found in the solidarity that has been forged there. Cochlear implantation forced the deaf community to reevaluate this solidarity and ask questions about what resilience looks like in the face of hearing loss. Initially, many at Gallaudet feared implants, not just in terms of what they meant for a sense of identity but what they meant for the survival of their community. Yet this fear has tempered over the years, and what has replaced it is a better acceptance not just of this particular technology but of the diversity of the deaf experience. This, too, is resilience—facing a challenge, understanding it, learning from it, and then growing because of it.
Is Will Mellon “less deaf” than Sean Maiwald, since Mellon has cochlear implants, while Maiwald does not? Though their parents made different decisions for these two young men when they were toddlers, the decision about how to encounter the world is now theirs. At night, Will removes his cochlear implants and enters silence; at Gallaudet, Sean can remove his hearing aids and choose to sign. If autonomy is constitutive of resilience, both of them have it. But resilience also implies another force, whether human or not, that one must ward against, fight, oppose, and, possibly, overcome. You can’t be resilient against stasis. In the case of Will, this resilience wasn’t obtained in a flash or a moment. It took years of vocal rehabilitation and trust in technology to become the hearing man he has become when he uses his cochlear implant. Sean’s resilience expressed itself through education and language, the periodic steps and incremental realizations that he wanted to be part of the deaf community.
Early on Thanksgiving morning of 2017, my wife gave birth to a baby boy, Aiden. By Aiden’s third day on earth, after a 30-hour labor, visits from both of our families, and the two-hour catnaps we clocked between feedings, my wife and I were in a state of joyous exhaustion. He’s perfect—his button nose, sculpted lips, peach fuzz hair. We can’t stop staring at him. He’s also fragile and completely reliant on us; when he eats, gets changed, gets wrapped in his burrito-like swaddle. On that third day, close to ten in the morning, a nurse technician at George Washington Hospital came into our room. She pushed a computer module towards Aiden’s bassinet, where he was sleeping. She placed electrodes on certain positions on Aiden’s upper torso, like an EKG, and then placed headphones over his tiny ears. On the computer, two lines, one blue and one red, rose and fell like stock market wiggles as the nurse measured his brainstem’s response to sounds piped through his pinna, ear drum, and cochlea.
Morning light streamed through closed blinds. Aiden fussed and began to cry. The lines slowed their progress, and the nurse placed a gloved hand into his mouth to soothe him. He fell back into sleep. The lines rose and fell again. For him to pass the test, they would have to reach a flat plateau at the top of the screen. They didn’t, this first time. The nurse said it was probably because he was fussy. So she started over, and set the lines going north once again, one blue, one red. In the bassinet, our 7-pound son had wires sticking from his body. His breath rose and fell, his hands clenched beneath his swaddle, as the two lines moved up. In that moment, I understood the situations of Nancy and Ginny in a way I hadn’t before. Parenting is nothing if not an exercise in resiliency. I was learning that three days in. Their decisions to implant or not, though different, were similarly based on love. As, I hoped, my wife and I’s would be if those lines never made it to that flat plateau.
1 - Author interview with Nancy Mellon, from which this and subsequent quotes are taken.
2 - National Institutes of Health Research Reporting Tools. “Cochlear Implants.” https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=83 (accessed July 27, 2018)
3 - Atkin, Alison. “No Longer Deaf to the Past: The History of Deafness is as Old as Humanity.” Historytoday.com https://www.historytoday.com/alison-atkin/no-longer-deaf-past (accessed July 27, 2018)
4 - Rose, M. Lynn. “Deaf and Dumb in Ancient Greece.” In Disability Studies Reader, edited by Lennard J. Davis, Pages 17-33, Second Edition. New York and London: Routledge. 2006
5 - Packer, Lisa. “Hearing Aid History: From Ear Trumpets to Digital Technology.” Healthyhearing.com https://www.healthyhearing.com/report/47717-Digital-hearing-aid-history (accessed July 27, 2018)
6 - Mudry, Albert, MD, PhD and Mills, Mara, PhD, “The Early History of the Cochlear Implant: A Retrospective”, Journal of American Medical Association, Otolaryngology Head & Neck Surgery, May 2013, 139 (5): 446-453
7 - Ibid
8 - Ibid
9 - Virtual Medical Centre. “Ear Anatomy.” https://www.myvmc.com/anatomy/ear/ (accessed July 27, 2018)
10 - Mudry, Albert.
11 - Mudry, Albert.
12 - Chorost, Michael, Rebuilt: My Journey Back to the Hearing World, Mariner Books, 2006 PAGE NUMBER.
13 - National Institutes of Health Research Reporting Tools. “Cochlear Implants.” https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=83 (accessed July 27, 2018)
14 - “Cochlear implants”, National Institute on Deafness and Other Communication Disorders, National Institutes of Health, https://www.nidcd.nih.gov/health/cochlear-implants (accessed August 1, 2018)
15 - There are many resources that discuss how cochlear implantation works. The author has found the following video to be of great help. https://www.youtube.com/watch?v=LhSpb36_1s4 (accessed July 27, 2018)
16 - National Child Research Center. https://www.ncrcpreschool.org/ (accessed July 27, 2018)
17 - Gallaudet University. “Thomas Hopkins Gallaudet.” https://www.gallaudet.edu/about/history-and-traditions/thomas-hopkins-gallaudet (accessed July 27, 2018)
18 - Ibid
19 - Gallaudet University. “History and Traditions.” https://www.gallaudet.edu/about/history-and-traditions (accessed July 27, 2018)
20 - Stokoe, William. “Sign Language Structure: An Outline of the Visual Communications Systems of the American Deaf.” Studies of Linguistics, vol 8. University of Buffalo: 1960. 78 pages.
21 - Gallaudet University. “Deaf President Now.” https://www.gallaudet.edu/about/history-and-traditions/deaf-president-now (accessed July 27, 2018)
22 - IBID
23 - National Association of the Deaf. (1991, March) Cochlear implants in children: A position paper of the National Association of the Deaf. NAD Broadcaster, 13(1), 1.
24 - Dolnick, Edward. “Deafness as Culture.” The Atlantic Monthly. September 1993. Pages 37-49.
25 - Author interview with Ginny Maiwand, from which this and subsequent quotes are taken
26 - Chorost, Michael.
27 - U.S. Food and Drug Administration. “Benefits and Risks of Cochlear Implants.” https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/cochlearimplants/ucm062843.htm (accessed July 27, 2018)
28 - Chorost, Michael.
29 - Frazier-Maiwald, Virginia. Keys to Raising a Deaf Child. Barron’s Educational Series Inc. January 1999.
30 - Author interviews with Sean Maiwald, from which this and subsequent material are taken.
31 - Author interviews with Will Mellon, from which this and subsequent material are taken.
32 - National Institutes of Health, National Institute on Deafness and Other Communicative Disorders. https://www.nidcd.nih.gov/health/statistics/quick-statistics-hearing (accessed July 27, 2018)
33 - National Institutes of Health Research Reporting Tools. “Cochlear Implants.” https://report.nih.gov/nihfactsheets/ViewFactSheet.aspx?csid=83 (accessed July 27, 2018)