Cries and Whispers A parent's journey between deafness and Deaf culture

I Can Hear You Whisper: An Intimate Journey through the Science of Sound and Language

Lydia Denworth (Dutton, 2014) 400 pages with notes and index

All parents celebrate a child’s first word as an outstanding feat. As the child grows, so does his ability to understand more words, as well as string them to together to form sentences. After the initial awe subsides, speech and language development typically becomes common place. Lydia Denworth in her book I Can Hear You Whisper restores one’s awe at the amazing feat that is communication. As a scientific journalist, she dissects the process of language acquisition from auditory comprehension to speech production, but her quest for understanding is personal. Denworth’s third son, Alex, was born hearing-impaired.

The personal aspect of this book draws the reader in and moves you from sadness, to fear, to elation as Alex’s journey unfolds. The diagnosis of Alex’s hearing loss was a process that wasn’t complete until he was 2 and a-half years old. An age now classified as a late diagnosis. The advent of newborn hearing screenings has dropped the age of identification dramatically in the last 20 years. Despite failing his screening and having the appropriate follow-up, Alex’s loss was not identified. A mother’s sense of apprehension was clearly depicted. The first pages of I Can Hear You Whisper beautifully contrast the peaceful serenity and security of reading a well-loved bedtime story with the author’s growing, gnawing concern, as she wondered “Why can’t he point to the cow?”

The arduous task of getting Alex correctly diagnosed highlighted the steadfast persistence a parent must have in an unfamiliar, complex medical environment. The diagnosis itself evoked many emotions, but immediately led to Denworth’s declaration, “I need to know everything there is to know about ears.” This declaration embarked her on a journey into medical and cultural worlds that she never knew existed. Denworth takes the reader on this journey ‘learning about ears’ or more accurately hearing and deafness, which includes exploration of the science of speech and hearing, cochlear implants, and the Deaf culture and American Sign Language (ASL).

There are times when the discussion of the science becomes recondite. Fortunately, this does not last long before Alex’s story begins again and reconnects the reader to the bigger story.

The chapters on the science of speech and hearing passionately explain the intricate process of language comprehension and production. Denworth interviews dozens of researchers and clearly summarizes their work. For someone in the field, the familiar names read like a who’s who in auditory research. For a lay person, the information is understandable and intriguing, evoking an admiration for our remarkable language abilities. The researchers are described in a personable way and their years of research are pared down to a few pages of key points. It is often the case that the description of the researcher and the lab where the interview takes place is so descriptive, it is like sitting in on the interview with Denworth. There are times when the discussion of the science becomes recondite. Fortunately, this does not last long before Alex’s story begins again and reconnects the reader to the bigger story.

Two intriguing topics in the book are Deaf culture and cochlear implants. These areas added real-life drama as the controversy within and between these areas were presented. The capital D in Deaf denotes a cultural identity compared to deaf as a medical diagnosis. The Deaf believe that deafness is not something to be fixed, but is a natural part of who that individual is. Communication through American Sign Language ( ASL) is a major part of their identity. As Denworth explored Alex’s options, she honestly revealed that “the idea of raising a child in what to me was a foreign language was daunting.” This, however, did not prevent her from venturing into ASL.

The practicality of embracing a different culture and language is illustrated as the family works to incorporate ASL. A tutor was hired to teach the entire family ASL. It was an unsuccessful venture, as the majority of the tutoring time was spent trying to focus the attention of three young boys on a difficult learning task. Denworth, also, takes an intensive ASL class at Gallaudet University. Gallaudet is the only Deaf university in the country. She interviews several individuals on campus and finds a wide range of acceptance. Some individuals are unwilling to meet with her, while others are eager and enjoy sharing their story. In class, she finds herself hesitant to reveal that her son has a cochlear implant or that she is attending an AG Bell conference. At the end of the class she has a fascinating conversation with her instructor. They battled the language barrier, as no ASL interpreter was available and Denworth had only a basic sign vocabulary. At the end of the meeting, Denworth left appreciating their different views of the world. Ultimately the family’s choice for Alex, like most hearing parents of a deaf child, was to pursue hearing and verbal language. Denworth concluded, “First and foremost, he belonged to our culture.” From this perspective, one can understand why Deaf parents often do not implant their Deaf child.

Over the last 25 years, cochlear implants have revolutionized the treatment of deafness. More than 300,000 adults and children have an implant. Denworth chronicles the development of cochlear implants by sharing stories of both researchers and patients involved in the process. She provides history on the House implant and for each of the three cochlear implant companies, Cochlear Americas, Advanced Bionics, and Med-El. Early researchers faced significant criticisms from the medical community most of whom did not believe hearing restoration was possible. The personal and professional hardship faced by the developers of cochlear implants is a story that needs to be told. Among the pioneers was William House, who implanted the first FDA approved cochlear implant in the United States. It was a rudimentary single-channel device, which is like a one-lane dirt road compared today’s multi-channel implants, which is like a 6-lane interstate highway. These early devices, to the surprise of many, worked.

Denworth further humanizes the story by presenting individuals who received the first implanted devices. One individual, Chuck Graser, wrote to House every six months for more than 10 years. He was desperate for any chance at regaining some hearing. Graser lost his hearing suddenly after receiving ototoxic medications. He “experienced deafness purely as the loss of the life he had once had.” Rod Saunders was the first individual to receive a Cochlear Americas device. He underwent risky surgery for the chance to hear even though sound was only received in the lab when he was plugged into a computer. These gentlemen and other brave individuals gave selflessly of themselves knowing they may receive no benefit. They were driven by the deep desire to hear and communicate again, but even more so to contribute to this emerging technology, which had the potential to revolutionize the treatment of deafness.

She was surprised and disturbed by the division between Deaf and deaf/hearing-impaired individuals, describing the ongoing controversy like “entering a city under ceasefire, where the inhabitants had put down their weapons but the unease was still palpable.”

The adult patients who received the early cochlear implants were of interest to the medical community, but their stories did not reach the mainstream public. That fact changed in 1992 when 60 minutes aired “Caitlin’s Story.” Caitlin Parton, at 2 and a-half, was the first child implanted in the United States. People were amazed by this new technology and Parton’s ability to hear and speak. The Deaf community, however, did not view it as amazing. Implantation of a child was likened to child abuse and genocide of the Deaf. This began the heated controversy, demonstrations, and all out war between the Deaf culture and cochlear implant supporters. Denworth chronicles the turmoil that ensued sharing both sides of the story, but admitting she was surprised and disturbed by the division between Deaf and deaf/hearing-impaired individuals. She describes the ongoing controversy like “entering a city under ceasefire, where the inhabitants had put down their weapons but the unease was still palpable.”

The highlight of the book is the family’s journey. Of the personal stories, one of the most riveting was the account late in the book of Alex’s drop in hearing. A small bump on his head caused a loss of hearing in the non-implanted ear. The fear evoked in Alex and Denworth, their anxious trip into the city, and frantic search for the needed medicine read like a suspense novel. The reader cried along with Denworth in the pharmacy when the medicine could not be found and your heart broke when Alex said “I’m sorry I fell, Mommy.” This event was different for Denworth, because it was not just her distress, Alex was panicked. He had no sound. Until this point, his non-implanted ear had enough hearing to give some sound without amplification. Now the comfort of always having sound (without his hearing aid or cochlear implant on) was gone and Alex did not like it. The chapter also highlighted the dedicated medical professionals, the otologist, audiologist and pharmacist, postponing their holiday in the middle of a blizzard, to treat Alex. An effort that was rewarded when Alex’s hearing was restored to its previous level.

I Can Hear You Whisper is a unique combination of the science of child language development, speech production, hearing, and deafness, intertwined with a personal story. Although, the reader is sometimes left wanting more of Alex’s story and less science along the way, it is an interesting and informative book. A must read for any health professional, student in hearing and speech science, or individual affected by hearing loss or deafness.