What's That Pig Outdoors? Page 2
And so the good guys won. The victory seems to have been a heaven-sent opportunity, too. It may unite the hearing-impaired of America in facing a larger task: to prove to an indifferent (and sometimes hostile) hearing world that we are capable of taking our rightful places in society. Everywhere.
It won’t be an easy job. Because the rhetoric during the Gallaudet demonstrations sounded so much like that of two decades ago, some journalists and commentators misunderstood what had happened. One ultraconservative syndicated columnist, for example, likened the uprising to separatist Black Power tactics of the 1960s. Superficially that’s true. If deaf people sometimes appear self-segregated, working and socializing chiefly among themselves, most (like American blacks) have had little choice in a world that has tended to ignore and even reject them. But the deaf have not echoed the militaristic rhetoric and implicit violence of the Black Panthers, nor have they rejected the values of the hearing world, as the black militants loudly repudiated those of white America. The deaf have hardly been perceived as a threat to the stability of the hearing world. Apart from their brief flurry of revolutionary grandiloquence at Gallaudet, they have quietly asked only that their community be accepted as a proud, legitimate member of the plurality of cultures that makes up the United States.
Other journalists displayed abysmal ignorance in their eyewitness descriptions of the demonstrations. I was highly amused when reporters used the terms “silent” and “soundless” when writing of the marches. For the deaf tend to be noisy people, both vocally and in their actions. Even if most speak in sign, many use speech as well.
And I was chagrined when it became apparent that journalists covering the Gallaudet story tended to write as if all deaf people were members of the self-contained “deaf culture,” relying exclusively on sign language. Homogenizing the deaf in this way is like assuming all black Americans to be Democrats.
We are not all the same. Though I have been totally deaf for forty-six of my forty-nine years, I am a member of a minority within a minority: I am what is called an “oralist.” That is, I depend wholly on spoken language and lipreading, however imperfect they might be, to help me live and work in a hearing world. I do not know sign language at all.
For centuries there has been a gulf between the few speaking deaf and the many signing deaf, and not simply because we cannot, for the most part, communicate with one another. For a long time, especially in recent years, we—and our teachers—have quarreled over whether deaf children should be taught speech or sign.
Deafness frequently begins in the womb, the advocates of sign often point out. The normal fetus hears its mother’s crooning, and during the first two years after birth the child constantly soaks up sound. Missing all this, deaf-born children almost never catch up, the argument continues. If they learn to speak at all, it’s usually in an almost intelligible pidgin. Only sign language, its advocates declare, can give deaf infants an easily learned, natural, and efficient way to communicate. It’s undeniable that sign can be rich, dramatic, and powerful. The National Theater of the Deaf and such compelling plays and movies as Children of a Lesser God are proof that those who master sign can be as poetic as the Irish. But sign, counter the oralists, is not the best way to communicate with a hearing world that employs a wholly different language. Without speech, a deaf person will always be an outsider.
It is often contended that those like me—the deaf who master English and speak intelligibly—tend to have lost their hearing after having learned language. And their ability to lipread varies widely.
Nowadays many deaf children learn a compromise called “total communication,” the act of speaking and signing English at the same time, often with the use of residual hearing if the child has any. In theory it’s a sensible idea, say oralist critics, but in practice the simultaneity slows down both speech and sign and distracts the listener, hearing or deaf, who does not know sign. And for most children speech tends to be overshadowed by sign, for the latter is far easier to learn. Likewise, those who favor American Sign Language, which has a syntax of its own utterly unlike English, complain that total communication forces its users to sign in English word order, an almost incomprehensible pidgin version of ASL.
With such wrangling about methods of communication, it’s hardly surprising that popular books on deafness tend to be intense and onesided. Almost all in the last twenty years have favored sign, for until a sea change in the education of the deaf that occurred in the 1960s, most of the history of deafness in America was the history of oralism, the unrelenting and largely unsuccessful attempt to teach all the deaf to speak and read lips without relying on sign language.
Though I was reared in the oral method, this book is not an attempt to discredit one side of the issue and advocate another. The abilities of the hearing-impaired to communicate by one method or another differ vastly, as do the degrees of their hearing loss and the ways in which they cope with it. The loss may be total, severe, modest, or slight. It may have occurred in childhood or in adulthood. Some born without hearing also suffer from other handicaps, such as cerebral palsy.
Some hearing-impaired people, both speaking and signing, are bright, vital, aggressive personalities for whom no challenge is too great; some are dull, timid, and withdrawn, and prefer the path of least resistance. Most of the hearing-impaired, like the hearing, fall between those extremes. Sign language is best for some, lipreading and speech for others, and a combination of the two the most sensible compromise for many.
In this book I intend simply to tell my own story. If at times I sound like an advocate for oralism, it is because many deaf people who speak and read lips believe that they and their accomplishments have been minimized as unrepresentative and therefore unimportant by those who champion membership in the community of the signing deaf. To ignore the advantages of speech and lipreading for the few is as foolish as belittling the benefits of sign language for the many.
Still, I have no axes to grind, although from time to time I have taken issue with professional advice (often from oralist educators) given to my parents and me through the years. My experience may help some parents decide on the best course of action for their hearing-impaired children. It also may offer insight to educators—especially those sensitive enough to recognize that studies, statistics, and laboratory testing do not reveal the whole potential of an individual deaf child and that parents’ insights and wishes are not to be dismissed.
Most important, this volume is intended to help the hearing public understand something of what life is like for those who cannot hear. Deaf people share certain similarities with blind people, for each has suffered the loss of a sense. Our afflictions, however, are not the same. The consequences are profoundly different. Blindness is a handicap of mobility, deafness one of communication. Terrible as is loss of vision, it does not distance the blind from the sighted the way loss of hearing separates the deaf from the normal. Deafness opens up a huge social chasm between sufferers and nonsufferers. In the hearing world, deaf people tend to be solitary and ignored if they are lucky, lonely and rejected if they are not. That is why Samuel Johnson called deafness “the most desperate of human calamities.”
Can deafness be “conquered”? Nonsense. That’s a sentimental notion beloved by writers of inspirational literature. But, like a wolf at the edge of the forest, it can be held at bay.
2
“You just keeled over in the car beside me,” Mother remembers. That morning someone at the Fort Lauderdale Naval Air Station, where Dad was assigned, had declared I looked “peaked.” I had had a recent throat infection. There was no other warning of illness during that first week of January 1944. I was not quite three and a half years old.
When we arrived at home, Mother put me to bed, where I lay by turns somnolent and delirious, sometimes in a coma, as my temperature soared. For three days Mother and Dad called in Navy doctors, who thumped my chest, peered into my orifices, shook their heads in bafflement, and departed.
Then, on the fourth day, as the fever hovered at 104 degrees, Mother and Dad phoned Dr. Robert Blessing, a physician from Evanston, Illinois, who had retired to Florida but had been called back into harness by World War II. After a brief examination he swept me up in his arms and drove me to Broward County Hospital. His initial diagnosis was “purulent meningitis.” Not for several days did he make an official diagnosis, and even then he wasn’t certain of it.
Meningitis is a bacterial infection of the meninges, the membranes that envelop the brain and the upper part of the spinal cord. The symptoms are high fever, headache, stiff neck, and vomiting, and they are often preceded by a respiratory illness or sore throat. The patient usually progresses through irritability, confusion, drowsiness, stupor, and coma. Dehydration and shock sometimes follow. Today the fatality rate for acute meningitis is less than 10 percent when it is recognized early and treated with antibiotics. In 1944, however, only sulfa drugs were available. They often helped, but as is the case today, much depended on how soon treatment was started. Fatalities were common, and those who survived tended to suffer long-lasting physical consequences—such as deafness.
Furthermore, as late as the 1940s it was sometimes difficult to distinguish between meningitis and its close cousin, encephalitis, a viral inflammation. Most cases of encephalitis occur as a complication of viral infections such as measles, chicken pox, rubella, and smallpox vaccinations. Many of its symptoms are similar to those of meningitis. The symptoms I had were high fever, a stiff neck, and painful swelling and paralysis in my left knee and left arm. I was put into isolation and pumped full of fluids, Seconal, and sulfa. Dr. Blessing ordered a spinal tap and hot packs placed around my neck, back, left arm, and left leg.
The next day the spinal fluid findings indeed suggested a purulent meningitis. But the clinical symptoms, Dr. Blessing thought, bespoke encephalitis. What’s more, he wrote on my chart, the painful muscles in my paralyzed left arm and leg could indicate a particularly dangerous cousin of encephalitis—polio. He kept me on sulfa, but because he still suspected meningitis, he asked the Navy to see if it could locate a rare anti-influenzal serum. It couldn’t.
I was so acutely ill that my survival hung in the balance. But on the third day in the hospital, the seventh since onset, Dr. Blessing thought I looked a bit better. My neck was less painful and the knee swelling had subsided somewhat. I was lucid again. But the doctor was still uncertain what it all meant. “I cannot say there is no paralysis or paresis,” he wrote on the chart, “but cannot say there is. . . . Are we going to settle down to a Still’s disease [rheumatoid arthritis]?” The improvement continued through the fourth and fifth days, and I began to move my left leg and arm.
Then, on the sixth day, Dr. Blessing entered this ominous sentence on the chart: “There is some question of acuteness of hearing.” Shortly thereafter he called in my parents and broke the shattering news to them: “Your child is deaf.”
My subsequent recovery was rapid, and on the ninth day of hospitalization I was sent home. I was not able to walk, but Dr. Blessing considered the problem a “pseudoparalysis” that often accompanied encephalitis and would disappear in time. His diagnosis at discharge: influenzal encephalitis.
Is this indeed what it was? A neurologist at the U.S. Army Hospital at Coral Gables maintained not long afterward that I must have been suffering from meningitis, because deafness is a classic consequence of that disease. Recently, however, my family physician reviewed the records and speculated that I had taken a “one-two punch,” suffering from both meningitis and encephalitis—and that it was the meningitis that had caused the deafness, for the long period of high fever it brought had destroyed my auditory nerves, as the doctors had said in 1944.
Upon learning that I had lost my hearing, my parents had, of course, suffered the classic reaction of emotional devastation. “I was in a trance,” Mother says. “I felt the usual ‘It isn’t fair. It can’t happen to one of my children.’ But we were relieved that you were alive.”
For many parents, the verdict of deafness is like a death sentence for their child. How, they ask distraughtly, will their youngster be able to grow up to be a functioning member of society instead of being “deaf and dumb,” a representative of a less-than-human species to be pitied and scorned if not simply ignored? Even today some parents all but go into mourning over what appears to be the loss of their dreams.
Others are overcome by feelings of guilt and helplessness. Was there something they did not do that they should have done? Or something they did that they should not have done? For a long time Mother believed that if she had called Dr. Blessing earlier instead of the ineffectual Navy doctors, the siege of meningitis might not have been so severe and I would not have lost my hearing. It probably would have made no difference.
Aside from guilt complexes, the literature of deafness contains many heart-wrenching stories of parents who refused to accept their child’s loss of hearing, persisting in the futile faith that the sense would return or, if it did not, that somehow the child would look and behave exactly like a normal one. This, however, was the single ray of hope for my parents during my early days at home after the illness. Many well-meaning people, including doctors, said that as I learned to walk again, my hearing probably would return.
Dr. Blessing thought there was a slim chance, but he was not otherwise sanguine. His report of a checkup two months after my discharge reads: “Plays around office well, is good, and cooperative. He is obviously deaf but is very quick at anticipating requests. The family thinks he can read lips. I doubt this. I cannot demonstrate any neurological abnormality. There is no ataxia. Personality changes are certainly minimal now. . . . I think ‘Hank’ has made a very complete recovery with the exception of deafness and consider him fortunate. I think he must be under the continued observation of an otologist to evaluate the extent of nerve deafness, plan his teaching and care.”
Today, once parents have recovered from the shock of discovery that their child is deaf, they are greeted by a wide range of public and private resources. One choice for their child might be the mainstream of a local public school. Another might be a well-appointed state school for the deaf, or a more luxurious private day or residential institution. Any might offer oralism, sign, or “total communication.” (Total communication currently is the most common method, especially in public schools; American Sign Language is gaining strength in both public and residential schools; and oralism survives mostly at a number of private institutions for the deaf, of which some in recent years have made great strides in teaching techniques.)
In Fort Lauderdale, Florida, during that war year of 1944, few resources were available to the parents of a newly deafened toddler. Oralism was the sole officially approved method of teaching the deaf. But only in a few large cities did public schools offer programs for the deaf, almost always segregating them from the hearing. Elsewhere institutionalization was the norm—in a meagerly funded state school if the child was unlucky, in a wealthy private school if he was lucky. My parents had to make do with what they had. And, as it turned out, their greatest resource was their robust self-reliance.
Looking back from the perspective of more than forty years, I believe that if any parents ever were well suited to cope with a newly deafened child, mine were. Both Mother and Dad are intelligent, cultured, and tough-minded, with an eye for what we today call “maximizing possibilities.” They are proud and resolute and profoundly skeptical of educators who, solely on the basis of a brief round of testing, offer diagnoses and prognoses with absolute certainty.
My father, Manown Kisor (his first name, his mother’s maiden name, is Irish), is descended from the sturdy German-Irish stock of the steel country around Pittsburgh. He inherited the Irish way with words—he is a splendid writer and a storyteller of rich humor—as well as a taciturn stubbornness often associated with emigrants from Prussia. As a schoolboy he displayed considerable brilliance and attended the Virginia Military Institute for a year. Then he w
on an appointment to the U.S. Naval Academy and graduated in 1934. During the Depression the impoverished peacetime Navy could offer active duty to only half of its Annapolis graduates, and Dad was not chosen because of nearsightedness that had developed while he was at the academy. He entered civilian life, taking a junior executive job with Montgomery Ward in New York City, where he met Judith Merrell Du Bois, my mother, in 1935.
Mother comes from a mixture of French Huguenots and English who settled in northeastern Pennsylvania during the last years of the eighteenth century. Her paternal grandfather was a politician and diplomat, a consul in Germany and later Colombia; her maternal grandfather, a physician. After World War I her father helped build a railroad across Persia for the first Shah of Iran and later rose high in the U.S. intelligence community. During the 1920s he took his family with him to the Middle East and Europe, where Mother learned to cope each day with the unfamiliar and the extraordinary, developing a headstrong independence not altogether uncommon among young women of her age and station at that time. (Her stubbornness, in fact, matched Dad’s, and the trait eventually would stand me in good stead.) Thanks to her family’s foreign sojourns, she was fluent in French and German and had a smattering of Polish and Farsi. When the Du Boises returned to the United States in the early 1930s, she attended Chevy Chase, a junior college near Washington, then Scudder Secretarial School in Manhattan. The first job she found in those early years of the Depression was at the Bank Street School in New York City, typing manuscripts and operating the elevator, much to the horror of her aristocratic father. Before long, however, she found a more “suitable” secretarial position at Minnesota Mining & Manufacturing, where she was working when she and Dad met on a blind date.