by Henry Kisor
I am sometimes asked if writing these books helped me to come to terms with my deafness. Of course they did. Reliving experiences and emotions in print helps a writer wrestle with the rough patches of life. For instance, as Steve Martinez’s character took shape on the page, I realized that his sometimes obstinate prickliness about how whites perceived him mirrored my own as a deaf person in the hearing world. Sometimes Steve was his own worst enemy. Sometimes I had been my own, too. That lesson in equanimity I learned from the blind writer Ved Mehta hasn’t always stayed with me.
Perhaps more important, these whodunits enabled me to exploit my deafness to an even greater extent than I had in Pig, Zephyr, and Gin Fizz. Those three books were works of personal journalism, a genre in which events are more important than introspection, but fiction allows its practitioners to plumb deeper feelings for the sake of art. This is why so many first novels are loosely but undeniably grounded on the inner lives of their authors. The trick is to move on in successive books until imagination, not autobiography, drives the compulsion to write.
Now Steve and his gorgeous girlfriend Ginny—indeed, all the imaginary characters of my fictional Porcupine County, Michigan—have become so real to me that I have kept on writing just to find out what happens to them.
In all these adventures I was the beneficiary of enormous technological advances. In the earlier incarnation of this book I wrote that the second half of the twentieth century, with its TTYs, phone relay systems, and other electronic marvels, marked a good time for an American to be deaf. That wasn’t the half of it—not in an era when improvements in technology zip along at light speed.
Now both the TTY and the telephone relay system are fading into obsolescence, replaced not only by computer-based relay services and e-mail but “instant messaging” on computers and “text messaging” on cell phones and wireless pagers (at this writing, BlackBerrys, iPhones, iPod Touches, and especially Sidekicks are popular with deaf people everywhere). Wherever I am, I can “keyboard-talk” on my Sidekick by instant messaging or relay with Debby, taxi dispatchers, or anyone with a text pager or computer. With my Sidekick I even obtained weather conditions while aloft in my airplane.
There is, however, a dark side to relay services. Many merchants hate them, even though they are familiar with the workings of the services. Scammers take advantage of the merchants’ good natures, and all too many English-illiterate callers and inept relay operators frustrate easy communication. I try hard to keep my typed text simple and clear, and for the most part that works, although a doofus of a relay op can throw a monkey wrench into the machinery.
Late in my career as a newspaper book editor, increasingly tight editorial budgets dried up funds for interview tape transcriptions. At first I tried the Edward Hoagland trick, asking my interviewees to type their responses on a laptop computer to my questions as instant transcripts. Some, including Martin Amis, the British bad-boy novelist; A. Scott Berg, the affable biographer of Charles Lindbergh, and William Langewiesche, the distinguished nonfiction writer (himself a pilot) participated enthusiastically. Alice McDermott, the Irish-American novelist, was so annoyed by one of my questions that she heatedly pounded out her response while I worried about my fragile laptop.
Many more writers, however, were uncomfortable with the idea of typing instead of speaking their answers and declined my proposal to use the technique, despite the urgings of their publicists. In a few instances I used e-mail to interview these authors, but this means of comunication lacked the unguarded spontaneity of face-to-face conversation that so often makes an author profile stand out. It’s hard to describe physical mannerisms and facial expressions when you can’t see them.
For these reasons I did fewer and fewer author profiles and sometimes felt that I was cheating the Sun-Times of my talents, until I remembered that the budget squeeze was at fault. Everybody suffered from it—not just me. I was not being discriminated against. This wasn’t a transgression against the Americans with Disabilities Act.
In any case, I continued to tape—and pay for the transcriptions of—interviews for my books. Finding competent transcribers was never easy. One of them, a professional secretary, was excellent—but she took it upon herself to “edit out” what she thought was useless dialogue that I shouldn’t have to pay for. During my research for Zephyr, she omitted from the transcript a bizarre ten-minute exchange between a patient Amtrak official and a drunken passenger that—later transcribed by my son Conan—turned out to be a key episode in the book.
I did use e-mail, computer relay services, and wireless text messaging to deal with reviewers and publishers. For most of the later 1990s and well into the 2000s I rarely had to ask anyone at the Sun-Times to make phone calls for me. Nor did I need to bother Debby at home, except to ask her once a month to re-order my prescriptions on complicated pharmacy voicemail systems.
Deaf people now have the Video Relay Service, an Internet communications scheme in which the deaf customer and interpreter use either webcams or videophones to exchange messages in sign or in spoken language. It’s a godsend for people who are poor typists or whose English is shaky—or both. On my Mac computers I’ve used Skype videoconferencing software to speak to friends and family using my voice—and to lipread them as well onscreen.
Many deaf people write blogs, and so do I. One reason I maintain two daily blogs and a Web site is to promote my books. Another reason is that a blog, like all the writing I did for newspapers, enables me to communicate with the hearing world on its own terms. Blogging is a wonderful way of coping with isolation, of staying connected.
In my view the most important technological advance for the deaf continues to be the cochlear implant, which over the last two decades has grown ever more sophisticated and effective. Some 100,000 people around the globe have received them. With the help of the Americans with Disabilities Act, they have helped “mainstream” many, many young deaf Americans in neighborhood public schools as well as colleges and universities once closed to deaf students. Babies as young as nine months old are receiving cochlear implants and, like their hearing brothers and sisters, are soaking up the speech of their parents during the vital early years when the human brain is most efficient at learning language.
Am I closer to obtaining a cochlear implant? No. My inner ear is still ossified and the state of the art does not yet guarantee me more than an appreciation of environmental sound, let alone understanding “open set” speech without lipreading. That’s not enough for me to want to undergo the knife again—a total knee replacement, a spinal fusion, two cataract surgeries, and a heart bypass in recent years have been plenty.
But learning about cochlear implants has advanced by leaps and bounds my understanding of what happened to me in 1944. Doctors said then that my auditory nerve had been destroyed. Actually, it had remained intact; what was obliterated were the fragile little hair cells inside the cochlea of the inner ear that relayed sound waves to the auditory nerve.
And it is possible—dimly possible—that the treatment of the time contributed to the problem. Dr. Robert Blessing wrote that he had used sulfa to treat the meningitis I had suffered. Today it is known that some sulfa drugs are ototoxic, or harmful to the ear. Not all are. Dr. Blessing did not say precisely which form of sulfa he used. I can only speculate, but I think the high fever of meningitis (and encephalitis, if I had that as well) fried those hair cells—and maybe, just maybe, sulfa helped fan the flames while at the same time saving my life. We probably will never know.
In the original edition of Pig, I was a bit skeptical about the Americans with Disabilities Act of 1990, worrying that unintended consequences would damage its effectiveness. In its early days the law indeed was abused by people who stretched the definition of “disability” beyond all recognition, even using it to commit fraud. Fearing financial burdens from having to pay for sign language interpreters, some cash-strapped physicians sent deaf patients elsewhere. To avoid possible ADA-based lawsuits in the future, some
corporations quietly instructed their personnel managers to avoid hiring people with disabilities.
One ironic development was that the ADA spurred colleges and universities everywhere to open their doors to deaf students, skimming the cream of the academic crop and leaving a much smaller, less well prepared pool of incoming undergraduates for Gallaudet University. Academic standards eroded and graduation rates fell at Gallaudet, and a disaffected student body and faculty revolted against the administration, endangering the university’s accreditation.
Still, over the last two decades the ADA has proved remarkably useful. In the early days of the act, being able to use hotel-provided captioned television, TDDs, doorbell signalers, and the like made traveling much easier for deaf people, especially this one. More than that, however, the ADA has continued to raise national consciousness about the deaf in particular and people with disabilities in general. Enlightened employers are continuing to make the lives of deaf employees much easier with simple and reasonable accommodations that cost very little.
In the first edition of this book, I interchangeably used the terms “deaf” and “hearing impaired” to describe everyone in the state of not-hearing-at-all or not-hearing-very-well. Even then many in the Deaf culture detested the term “hearing impaired,” and I’ll admit I used it partly to poke the more hostile ones in the eye with a sharp stick. Over the years, however, I have come around to the view that “hearing impaired” is not the best choice of words to describe a group of people who do not in any way consider themselves physically handicapped. Any group has the right to be called what it wants to be called, even though ignorant outsiders might employ other terms. Using capital-D “Deaf” for those who identify with the culture of American Sign Language is simply a reasonable accommodation to diversity. Today I have no trouble with it at all.
But what about “small-d” deaf people, those who lose their hearing in childhood or adulthood and choose to stay with spoken English as the language of preference and remain members of the hearing culture? This is a more difficult question to answer. “Hard of hearing,” a term the Deaf seem to prefer for us, isn’t really suitable for those, like me, who are profoundly or totally deaf. And “deaf” doesn’t seem a precise description for those with mild hearing loss.
“Hearing impaired” seems to be the most accurate term for people like me. After all, my hearing was impaired all those decades ago—impaired into nonexistence. This is why I still think of my deafness as a disability, not a culture. I am acutely aware of what I lost to meningitis: the melodies of Chopin and Berlioz, the sigh of wind in the trees, voices on the telephone, the murmur of my wife and children, the siren of a rapidly approaching fire engine out of my sight, the rumble of a freight train down the tracks, the warning roar of an airplane engine starting up down the ramp. At these times deafness is definitely a handicap.
I’ve come to agree, however, that “handicapped” or “disabled” are not useful terms to describe those who don’t feel they suffer from not hearing. If the Deaf don’t miss what they’ve never had, where’s the disability? The real handicap, they will argue—and not without justification—is not within themselves but in the obsolete and benighted views many ignorant hearing people have of the deaf. Not for nothing did the existential philosophers declare that hell is other people.
Another view might be that “disability” is a relative term. Most of the time deaf people of all kinds are not handicapped. We walk happily through most ordinary days, going to work and talking with our friends and families, without thinking about our lack of hearing. Once in a while we are painfully reminded of it. When that happens, it can be devastating. In 2006 Tara Rose McAvoy, an ASL speaker and Miss Deaf Texas, was walking along railroad tracks, rapt in her text pager, when a speeding freight train, its horn blaring, struck her from behind and killed her. Not long before, I had been walking down an airport ramp to my airplane, my eyes to the right admiring the other planes lined up on the tarmac, when I suddenly looked forward and saw uncomfortably close up the whirling propellers of a big twin whose engines had just been started. A few more seconds of inattentiveness and I would have been hamburger. On those occasions both Ms. McAvoy and I were definitely handicapped by our deafness, but I was luckier.
Perhaps a good umbrella term for us might be “Deaf and hearing-impaired”? That might work for those who know all about us, but it’ll only confuse the ignorant public, who’ll just think the phrase is redundant. So go the vicissitudes of identity politics. We can’t please everybody. But we can respect their choices, whatever they may be. Over the years, simple usage may shake better words out of the bush of language, just as “journalist” has replaced the quaintly sexist “newspaperman,” which I used with abandon twenty years ago.
Arguments still rage among us. More and more very young deaf children are receiving cochlear implants, and many in the Deaf world continue to view the procedure as an engine of genocide. Increasingly, however, if parents conscientiously follow through after the surgery as they should, their youngsters thrive. Some authorities advocate the learning of ASL at the same time as the surgery, so that if the post-op therapy is unsuccessful the children won’t miss out on early language development. They also point out that having two native languages never hurt anybody. That sounds eminently reasonable to me. As these children grow older, they may have two cultures to choose from and even switch between.
These days quite a few hearing infants get a jump start on language development by learning ASL-based “baby signs” from their hearing parents. Infants can recognize and use gestural language long before they can verbalize. Colin’s wife Melody is one of those parents. She taught some rudiments of ASL to Will, our first grandchild, whose hearing is perfectly normal, when he was about six months old, and used it with him until he was seventeen months old. When Will turned out to be slower than his peers to speak, Melody worried that ASL was hindering his voiced language and, at the suggestion of a child development specialist, stopped it. At eighteen months Will began to talk and never shut up. In that family it’s sometimes hard to get a word in edgewise when he’s around.
Did knowing baby sign advance Will’s speech or hinder it? Melody is suspicious about the timing of the stop in the signs and the boom in his spoken language, but she also thinks they probably didn’t do enough signing for it to slow his speech. And there was one occasion in which the ASL was a godsend to both mother and son.
When Will was fourteen months old, he contracted a horrible bug, the Norwalk virus, and vomited and passed diarrhea for ten days, losing an alarming amount of weight. One day he lay in his bed whimpering weakly. At first Melody did not know whether his crying was from pain, fever or hunger—but when he made the sign for milk, she knew he wanted to nurse. She was grateful for that instant of communication.
If we don’t know that ASL actually advanced Will’s speech, it doesn’t seem to have hurt at all. The lad definitely inherited his forebears’ commodious vocabulary and knack for language. At this writing he is seven years old and speaks with a degree of sophistication a year ahead of his peers. But Will’s once fuzzy, lisping enunciation, quite normal for his preschool age group, for a long time made him often hard to understand. This was especially true for a deaf grandfather who lives in another city and sees him for only a few days several times a year, and thus could not get quickly used to lipreading his speech patterns. But he has never had trouble understanding mine, and as he has grown I have had far less trouble understanding his.
When he was a toddler my deafness annoyed him in an important way. When his back was to me, I could not tell if he was talking—to his friends, his parents, or his toys—and at these moments I tend to speak up, inadvertently interrupting whoever might be talking. Like everyone else, he hated to be interrupted, and he’d whirl upon me, hold up a hand, and bark like a pint-sized drill sergeant, “Stop talking!” As toddlers his father and his uncle never had this problem, for unlike Will, they had been an intimate part of my life
since birth and understood from infancy the quirks of their father’s deafness.
Incidentally, during my father’s last months in a nursing home, those quirks prevented easy communication with him. His hearing and his cognitive abilities had deteriorated, and he could no longer understand my speech—and I had difficulty understanding his, for his lip movements were no longer clear and precise. This frustrated both of us. Otherwise we were content just to bask in each other’s presence. I watched ball games on the television with him, and every time a Cub struck out with two out and the bases loaded, he and I would glance at each other knowingly and shrug, sharing a lifetime of heartbreak at Wrigley Field.
Whether we choose (or are born to) Deaf culture or the hearing one (or both), all of us who do not hear are enjoying a continuing phenomenon that had become visible only about a quarter of a century ago: thanks in part to the ADA and thanks in part to deaf people’s own efforts, society in general has become more accepting of our abilities and our idiosyncrasies. And so have we ourselves. Though there are still noisy extremists on both sides of the Deaf/deaf divide, a greater number of us today seem to be willing to acknowledge the right of others to subscribe to differing philosophies. I in particular am no longer so dubious, as I was when writing the first edition of this book, about the potential of native ASL speakers to break glass ceilings—too many Deaf doctors and lawyers and professors have come along in the last generation for any reasonable American to hold such an obsolete and condescending idea any longer.