SPINNING THE DISTAFF TALE

Hugh J. Schwartzberg, Esq.

Delivered at the Chicago Literary Club

on March 15, 1993

Spinning the Distaff Tale

Except for my daughter and a handful of others, the feminist revolt which marked the latter half of the 20th Century transformed the women of our culture. For my wife, the fact of my daughter altered the mix. Biology almost won.

This is not exactly biography. Biographies have beginnings and middles and ends. These stories, happily, have no end at all. These tales are too personal to be told anywhere other than here, and may be an improper imposition even for this crew. It seems strange to be offering a sort of Valentine on the Ides of March, and in the absence of its subjects.

When I first met Joanne, she was sixteen and radiant and Radcliffe; and a blow to the heart of more than one of us across the Commons. She was a Freshman; I was seventeen, a few months and an academic year older, her brother's roommate. For more than six years we distressed that brother with an on‑again, off‑again quarrel.

She was a music major then, a pianist, and the offspring of two Harvard/Radcliffe graduates, both of whom held a summa cum laude degree from that strangely‑divided institution.

Joanne had shown early intellectual promise. When she was almost two, her economist father and her child psychologist mother felt compelled to spy on their offspring. Said her mother: "See. I told you. She just did it again. First she looks around; makes certain no one is watching. Then she hits her brother, and then she begins to cry."

She was three when Nadia Boulanger asked to take over the raising of that young musical prodigy, but her mother refused, insisting that a bright child would do well in any field. As a child, she spent some time at Sunrise Colony in Michigan, that farm‑based Utopia which had been created by her Anarchist grandfather, Joseph J. Cohen. For her secondary education, her parents, like the Clintons, chose Sidwell Friends.

I was not there at those beginnings, but I remember the unhappy middle of this story quite well. We were at Joanne's medical school class reunion, the kind where everyone is bursting to recite the conventional accomplishments. How goes the research? "I'm not doing research anymore", she answered. Where are you teaching? "I'm not really teaching." What hospitals are you affiliated with these days? "None. I deal with several, but...." You are still seeing patients, I assume? "Not really; I...." I could see her classmates almost recoil, one by one. "They're right you know: I don't even have any of the credentials." They were not right, I insisted, but didn't know how to set them or the record straight.

And I remember the 1950s. During our undergraduate years, I was called down to the Dean's office to explain how I had dared to allow Radcliffe women into certain Harvard organizations without advance, official permission from the Dean's office. Joanne played Puck for the Harvard Dramatic Club, but there was no ideology involved in that.

She had, meanwhile, switched from Music to History and Literature, which may be why she received her B.A. only magna cum laude.

Shortly before her scheduled graduation, she was stricken with Polio. Taken to Florida to recuperate, she taught herself guitar, recovered, and determined that History and Lit were also not for her. She had decided to become a physician.

In four years she had not taken one single science course; she had none of the prerequisites. A year later she had completed all requirements, bundling all the science courses into a single year.

At Harvard Med, and later at Columbia, almost the first question on her admissions interview came in the form: "Why do you think you have the right to take a man's place in this medical school?" In those days, there were, at best, three to five women students in any one medical school class. The absolute barriers had fallen, but an attitude remained.

"I have studied the matter," she lied. "I plan to take time out of the practice of medicine, probably for several years, to raise a family. Based on probable life expectancy, I expect to devote more years to the practice of medicine than will my male colleagues."

Both Columbia and Harvard accepted her. Yale had not asked that question. She elected to go to Yale instead.

That summer, I proposed again. This time, I was accepted. Then (and typical of that Age) we discussed whether she should still attend medical school, and where. For years afterwards, I was inordinately proud that I had put my wife through medical school, rather than vice versa.

Forgive my ancient ignorance, and the culture in which I had been raised, but without any help at home, Joanne cooked, cleaned, shopped, made the bed, did the laundry and still found time to mend my socks, with only occasional assistance in feeding from local restaurants.

In anatomy class, she was assigned, along with the two other females, to a male cadaver of four or five hundred pounds, so large that searching through the fat for human body parts was a chore, and so heavy that the three of them together found it impossible to turn that corpse. If you believe that assignment was accidental, you no longer remember the Age.

Her fellow students told the raunchiest jokes they could, and always managed to do so in her immediate presence. She kept a straight face. Little did they know that she came home at night to ask me to define those strange words, and to explain those strange stories.

When my military obligation evaporated, I was eager to move to Chicago, where I planned to destroy the Chicago political machine, which was then my highest ambition, and another tale altogether. Without thinking twice about it, I offered Joanne a chance to chose a Chicago medical school in order to complete her education. She transferred from Yale to Northwestern without a whimper.

In Chicago, she continued to keep house, in the same manner. In addition, she helped keep the records that were to be the foundation of my nascent, ultimately abortive, political career. Those records changed local politics for a generation.

Together, we worked a precinct. After we carried it the first time, the local precinct captain offered to arrange an internship at Cook County Hospital when the time came, if Joanne would only lay off. We remained virtuous.

In 1960, during her senior year of medical school, she served as a candidate's wife, more effective than the candidate. At one point, George Dunne made the mistake of inviting her up to debate with him while I went off to a different meeting.

When she received her degree, we sent out a printed note which may have had some side effects. We suggested that Mr. and Mrs. was no longer an appropriate designation, but that Mr. and Dr. would do. I don't know whether or not that was the opening blow in the language wars which have so confused this nation ever since.

As a resident, her chosen field was internal medicine. She began to investigate glamerulonephritis. She also taught physical diagnosis. Much later, she and Dr. Walter Alvarez would sit together at brunch, diagnosing people by their gaits as they passed by.

The young researcher was called into the Dean's office to discuss her stipend. The Northwestern administration explained that, of course, she could not expect as much pay as her male colleagues because "You do not have to support your family."

She was working on what was then an unknown area, the use of fluorescent antibodies. As planned, her first child, a son, was born at the end of her first year of fellowship.

She took two weeks off before that birth. Seven months later she returned to her research.

She was forced to work alone, slowed by that and by a limited budget. When a large Columbia med team announced the completion of the same research, Joanne could only offer to confirm the results, just a little bit too late. There are no second place prizes in American medical research.

She now held a grant from the National Institute of Health. That grant was probably a "first": it contained a specific pregnancy clause, which was designed to allow her to take time off for a second child.

Pursuant to plan, she became pregnant with our second two years after the first. What was not planned was a viral infection with a scary rash. She had had a diagnosed case of German measles many years before. Now, laboratory confirmation made it certain that she had Rubella and that she was at the beginning of the second trimester of pregnancy.

At Harvard Medical School, we consulted a famous physician, the three of us going off to the Harvard medical library together. Could deafness be expected from a Rubella infection occurring during the second trimester? We did not find the one obscure Australian reference which might have given us a firm, dark answer. A second trimester abortion, possibly legal in some place other than Massachusetts, was deemed a medical risk to the mother unwarranted under the circumstances.

In the ninth month, the New England Journal of Medicine published an article which warned of fetal damage from German measles even late in pregnancy, in what was proving a more virulent epidemic. By then, we could only watch and wait.

Looking for possible deafness from the beginning gave us an enormous potential advantage in timing educational efforts. Another physician almost blew that advantage.

When Jenny was three months old, the most respected otologist in this city agreed that she was probably deaf, but advised us that one could not be certain of the extent of the deafness, and that we should come back when she was about three, to ascertain the full extent of the deficit, and to begin to deal with the problem at that time.

This advice was dead wrong on several counts. First, adequate means for measuring deafness in the period immediately after birth were already available. Second, the key to education of the deaf is to begin as early as possible. Third, early amplification is of immense assistance while the infant mind can still utilize its programmed capabilities for acquiring language. This is true even of the most profoundly deaf.

Powerful bass sounds from a dance floor can be felt with one's feet. Sound can be known through one's skin, if nothing else. Even so‑called "stone" deafness does not usually bar some input through the ears. So amplification is of some importance even to the very deaf.

The ability to acquire language is preprogrammed for early use. If that ability is used, the infant recreates language itself. If no sound is heard, no speech is produced. For most of the deaf before this century, no speech did emerge; for centuries, to be deaf was to be presumed incapable of speech: i.e., deaf‑and‑dumb, that hideous and inaccurate appellation.

And the ability to use what hearing one has can be improved by lessons in listening, called auditory training, the earlier the better.

We had, of course, immersed ourselves in the literature of deafness. We decided to ignore that otologist.

Our first decision was whether or not to raise the child ourselves. We faced the heart‑rending possibility that institutionalization might be the best course. For a while, it seemed the single best program might be that of the Saint Joseph Institute for the Deaf in St. Louis, Missouri, which would mean turning her over to another religion, peculiarly painful to me, but the possibility existed that a group of dedicated nuns with much time and with no children of their own might be best for our daughter.

All this was complicated by the war‑like character of the dispute between different forms of deaf education, battles which still ignite verbal violence even to this day.

Preliminary research suggested to me that the single, most potent form for teaching language to the deaf might be finger‑spelling, (one signal, one letter). Joanne feels that would have been a disaster.

Cued speech, a modern alternative which combines lip‑reading with hand‑signals or electronic cues, had not yet been invented.

Nor was so called "total communication" (lip‑reading plus signs), which it did emerge, seemed an obvious snare and delusion.

Signing, like finger‑spelling, at least provides some degree of certainty in the communication. As much as 40% of the best lip reading by the best lip‑readers is lost. Much lip‑reading is guess work, complicated by the fact that sounds like M and B are identical (or almost identical) on the lips.

Oralism (or pure lip‑reading) is complicated by the fact that no child in its right mind will choose oralism for itself. It just seems too difficult. So kids who are supposed to be learning by a purely "oral" method tend to use their hands for conventional signs or to create their own, seeking some ease for their own communication among peers. Most of them come to hate lip‑reading and everything associated with it.

On the other hand, learning signs means learning a limited vocabulary of a few thousand signals, probably itself a restriction on the development of intellect, say some linguists. Signers also run the risk of being trapped, permanently, in one of the smallest linguistic groups in the world, that of the deaf community itself, usually needing translators in order to communicate with anyone outside that narrow world. As a transmission belt to acquisition of the English language, signing usually produces children three to four age‑grades behind the norm.

Armed with some of this background, we went off to visit a few of the institutions. The speech we heard was grating to the ear at the best of schools, and almost beyond our understanding. At Lexington School for the Deaf, one of the finest "oral" schools in the country, we saw children punished for any hint of signing in class, who could be seen signing to each other in semi‑secrecy, in the corridors.

The world of signers, on the other hand, seemed terrifyingly narrow and intellectually impoverished. To me, even Gallaudet College in many ways seemed more a high school than a university. As a father I was almost in despair. I assume Joanne felt the same way, although we hid it from each other.

The alternative, if there was one, lay in individual instruction. If a child was kept separate from other deaf, I theorized, the temptation to sign could be removed during the prime period of acquisition of language. Oralism seemed to have a better chance that way, based on the material we tried to assemble.

We had been using au pairs to help raise Steven. Now we looked for, and were lucky enough to find, a live‑in orally‑oriented teacher who would assist with Jenny in exchange for room, board and a small stipend.

We moved into McCormick Theological Seminary (where I occasionally gave guest‑lectures), as one of several non‑Presbyterian families, because it provided a large house within a five‑block area which was not fully open to automobile traffic. For years, we were haunted by the image of a child darting out into the street who would be unable to hear an automobile horn.

For geographical reasons, the move into the Seminary marked an end to my political career. Nothing seemed as important as Jenny, who had come to color our universe.

Instead of returning to medical research, Joanne began to study and implement new means of teaching the deaf.

In the beginning was binaural amplification. Most institutions were then using monaural aids. We became convinced almost immediately that an innovator in Los Angeles, Ciwa Griffiths, was correct in stressing binauralism.

The earmolds for her aids kept falling out of Jenny's ears. Joanne sewed bonnets that tied under Jenny's chin and held her earmolds in place. The aids themselves kept falling out of their harness. Joanne sewed white cotton vests which held the two aids in place. The aids squealed. We learned about greases; we learned to keep getting new earmolds to match her growth. We learned to have her swallow while the molds were being made. We learned a thousand things mostly forgotten. Of course, we should have kept notes, but we did not. We were out to save one child, not a world.

In the beginning was also the mouth. Sounds repeated over and over, with all of the child's attention being drawn to our mouths. Close up. The same words over and over. Endlessly; tirelessly; but we were tired. So we borrowed people. People to repeat sounds, to repeat words, to play. To repeat sounds over and over and over again.

We were told, and we read, that deaf children had difficulty in learning what emotions are, and in dealing with them. So Joanne began drawing stick figures with fill‑in‑the‑circle faces to teach emotions. "This is happy" (curve going up). "This is sad" (curve going down). "These are tears." "Unhappy." (A later article by Joanne on this subject was widely reproduced, and I believe the technique is now commonplace.)

Some of the first books Joanne used were assemblages of Polaroid photos with hand‑printed words. They were read over and over again, with the child being drawn to look at the speaker's lips and then at the book. "Jenny went to the zoo." "Jenny feeds the elephant." "See the giraffe." "See Jenny at the zoo."

At an astoundingly early age, we used the letters of the alphabet. Blocks were sounded and resounded. The house was plastered with words long before she could read. The word "chair", on each chair. The word "couch", on couch, "wall" on wall, "rug" on the rug.

And when she was 22 months old, not yet two years old, we sent her off to school, part‑time, to the Near North Montessori School. She was so small that she had to crawl up the stairs. She simply couldn't go up the stairs standing up, her legs just wouldn't reach, the aids click‑clacking as they bounced at each tread.

This was a school where each child was expected to acquire initial instruction on a one‑on‑one basis, and students then proceeded to work on their own individual projects. This was a system which fit the needs of a deaf child almost perfectly, but without other deaf children to encourage the easy out of manual communication. A place where sandpaper letters might just as well have been designed for deaf language acquisition. And where individualized instruction did not single out the child as "different."

When a parental dispute almost destroyed the school, Joanne and I had to go in and save it, because the school meant more to us than to anyone else. Somehow we convinced a dozen lawyers to stop tearing at each other's throats, and designed a set of by‑laws which moved the violence offstage.

Dr. Joanne became President of the school, and she set off on a program of school expansion, always managing to keep the school one grade ahead of Jenny, with the Jenny‑factor being kept almost invisible. Today, that one‑time pre‑school is a major institution with several hundred students and its own permanent building.

One friend of ours was working on an educational toy based on word link‑ups. Using different shapes for nouns, verbs, adjectives, she invented a system to build big‑letter sentences like one long jigsaw puzzle. So we tried it: used it. And she helped. Another mouth going. Another gain.

And lessons. All kinds of lessons. Lessons at Northwestern University Speech Clinic in Evanston. ("We are very sorry," said the then Executive Secretary of the clinic, "but Jenny does not seem to have the ability to utilize this program.") We insisted on continuing.

Jenny's loss was ultimately measured at 85 to 110 decibels. At one point, the loss seemed to be increasing. Were we doing more harm than good with amplification? Speech lessons. Hearing lessons. Home lessons. Correspondence lessons. We received correspondence suggestions and help from the John Tracy Clinic in Los Angeles, the Alexander Graham Bell Association in Washington, D.C. and from the Hear Foundation in Pasadena. We took advice from anybody, and were grateful.

When Jenny was three or four, her doctors told us that her amblyopia (the "wandering eye" problem) required surgery, because blindness was threatened. How does one prepare a deaf child for surgery, of a kind which requires blindfolding the eyes and thereby shutting a deaf child into darkness. If the surgeon or the anesthetist is masked, no words can be understood, even if the lips could otherwise be read. Joanne asked for permission to scrub in, with a plastic see‑through mask. And she began to try to prepare Jenny for a period when without sight she would be largely sense‑deprived.

Joanne received permission to go through Michael Reese Hospital in advance, with Jenny, Polaroid camera at the ready, another "book" to be prepared. The nurses who dealt with "preparing" children for surgery later declared Jenny to have been the single best‑prepared child patient ever seen, hearing or not. This led to an article by Joanne giving general advice on hospital preparation for handicapped children, also widely reprinted.

I still remember the doll with an eye patch. Each of us wore eye‑patches. It wasn't fun. And I remember Jenny's absolute calm, until the day after the surgery when the eye‑patch was removed and she rushed to the mirror and screamed, screamed, screamed at that red and misshapen eye: which is the temporary result of that operation by the usual rule, but a rule as to which no physician had thought to give warning. And I remember Jenny taking her eye‑patch doll and beating, beating, beating upon that eye.

People fear the different child. When Jenny was not invited to one of the neighborhood birthday parties, Joanne descended on that mother and convinced her to change her invite list.

Deafness can make families or destroy them; warp siblings, or encourage them to grow. Challenges change people.

When Jenny was four her brother, Steven, was six. Steven came home one day and asked: "Is Jenny stupid?" "Is Jenny what?" we demanded. "Is Jenny stupid,"he repeated. Steven said that he took her with him after school to meet some of his fellow students, and they called her stupid. It's begun, we thought. Did you think she was stupid last week when she completed that puzzle a little quicker than you did? "No." And did she beat you at that game last night because she was stupid? "No." "She is not stupid", he decided. "And I am going to tell them." And he did. He made them understand. And he became her defender and her protector throughout the years of her growing up.

When Jenny was five, she was sent to a summer day camp. A mimeographed newsletter appeared in which one of the camp counselors spoke of the lessons he had learned from Jenny's "bravery." The author had not realized that Jenny could already read. Jenny came to me and asked, "What does he mean by bravery? I am not brave."

With all of the expenses of endless lessons, Joanne was looking around for some way to help balance the family budget. Part of this was my fault, because of all of the books which I bought. So Joanne became literary editor of the local newspaper known as "Skyline." I wrote reviews under a dozen pseudonyms, and the house continued to fill up with even more books.

In our families we were all book worms, and usually parents tried to reduce the time a child wanted to spend reading. But with Jenny we were convinced that books were the key that might let her stumble out of the prison of deafness. There is a picture in my office of Jenny and Joanne on a log in the middle of a glorious spring day in the Forest Preserve. Jenny is not yet two. Her mother is reading to her, and Jenny is completely immersed in a picture book, oblivious to the sky, the water, the trees; only the book fills her universe.

Around the time she was six years old, I discovered to my surprise that she could read more quickly than I could, with great comprehension. And I am not a slow reader.

When she was seven, Jenny brought a Hebrew Primer home, and worked her way through it in one afternoon, including learning how to sound the letter "Cha," which even my wife has never been able to do. At thirteen, she was Bat Mitzvah. The congregation wept.

Her concentration is extraordinary, as if her whole being is focused on the work to be completed.

At an early age, we substituted Jenny for Joanne at more than one evening dinner of the Chaine Des Rotisseurs, the great French gourmet society. Jenny still believes that that level of

preparation is necessary in cooking, an error which we hesitate to correct. Not always, but often, we are privileged to share in the results of that belief, when Jenny plays family chef.

She is fascinated by genealogy, not just the family tree, but the family tales, those stories which make up the fabric of family legend. But we are getting ahead of ourselves.

You will recall that Joanne had been pushing Near North Montessori School one grade ahead of Jenny each year. When the time came to begin to implement a new high school, that program looked to be moving forward with Joanne's usual success. I was worried about all the pressures on Joanne. Don't you think its time to have someone else take on this particular burden? The moment the high school was no longer Joanne's project, the system failed.

There are no exams in Montessori. When Jenny went off by bus to the Roycemore School, in Evanston, a small private high school, they were very hesitant. They were hesitant about their ability to teach her, concerned about how much she had really learned, and afraid that they might acquire the stigma of becoming known as a place for the other kind of children.

By this time we had gone to war with the State of Illinois several times, arguing that Jenny was both handicapped and gifted. We argued that under existing state laws she was entitled to some funds for her education since there was nothing in public education which could deal with her "problem." We had donated that money to Near North Montessori. Roycemore, for all of its ultimate help to Jenny, was never willing to countersign on such an application to the state.

One day Jenny came home from high school and announced that she had gotten less than an "A" on a preliminary test. She was shocked. She was worried about how her parents would take it.

As a Senior at Roycemore, Jenny was the top student in general studies, and in French and Spanish as well. As one teacher explained, most students studying a foreign language see their problem as one of acquiring vocabulary. Jenny looked to see how the language was put together.

Also as a High School Senior, Jenny arranged to go to Northwestern University to take a course in Spanish. After testing, she announced that she had been signed up by Northwestern for a course in third‑year college conversational Spanish.

"It isn't one‑on‑one; you know you can't follow a group conversation." "I have to try it, Daddy." Even the instructor balked: "I'm not obligated to teach deaf students or high school students or anyone else who couldn't possibly keep up with the class." They compromised. Jenny would audit the course. No credit would be given.

At the end of the semester, this same teacher wrote a pleading letter to her own Administration, begging that she be allowed to give course credit and a grade to Jenny since Jenny had done all of the work, had participated fully, and had done at least as well as anyone else. The instructor did this completely on her own.

For a while I was afraid that all this might break Jenny's perfect "A" record. I had been ready for a fight with Harvard's admissions committee, based on its claim that children of Harvard alumni had admissions preference, all other things being equal. We had never said anything about her going to Harvard or to Yale. If admitted, I counted on the fact that she had always had a big thing about "tradition."

She scored 780 on the S.A.T. verbal, not the handicapped form, which does exist, but on the usual one. And she won the National Merit Scholarship, even up.

We visited Harvard for an admissions interview. I asked to go in with her. They refused. I pleaded that I would be her oral interpreter, but that did not move them. Not everyone can be lip‑read. An oral interpreter repeats what another says as they say it, but without sound. Even those institutions like the Courts, which understand the need for manual interpreters for the signing deaf, have rarely even known about oral interpreters. And while Jenny can usually come to understand how someone else talks, there can be initial difficulties even in the best of cases.

Later, she told us that the interviewer asked about her reading list. She had reported reading several hundred books a year. How many science fiction books had she read? (a couple of thousand). How many books did she read in a day? (five, when reading was all she was doing, but not every day). Later, I grabbed the admission officer. "What she told you is true," I insisted. "I know," he assured me. "We have met some of these before. Go talk to the Dean of Handicapped Students."

That Dean had a mustache, and Jenny could not follow a word he said. So this time I was the oral interpreter. "I am not going to shave off my mustache just for you," the Dean of Handicapped Students explained. "And you are going to have to go up to someone sitting in the front row of each of your classes and explain that you need that seat more than they do."

Maybe that creature was right, but Princeton recruited her like a football player, offering to pay students to take notes in her classes and for twenty minutes extra talk afterwards. "How can I turn them down, Daddy?" and she didn't. She did turn down Vassar and Bryn Mawr and Northwestern and Harvard and Yale.

Bryn Mawr had never had a deaf student. Harvard had probably had only two, including Helen Keller, blind‑and‑deaf. But Helen Keller, faced with a more terrible burden, had been accompanied by her companion‑interpreter Anne Sullivan Macy. Jenny was going it alone, as Princeton's second deaf student.

A group of Princeton students agreed to be trained as oral interpreters when we woke up to that necessity in her second year. The university gave full cooperation when we arranged that training program, and in everything else as well.

At one point, Jenny wanted to work in a particular area of history. Her tutor said that she would need medieval French. "I think I have that already," said Jenny. The professor, feeling that Jenny must have confused medieval French with the modern stuff, pulled down a volume of French manuscripts. Jenny translated from it, at sight, quickly. "Daddy, it was fun to see his jaw drop."

After receiving her BA from Princeton, she did some graduate work at Oxford. To our surprise, the one‑on‑one tutorial at that school did not turn out to be her particular brand of tea. After a year, she asked to return home to work for a while. With that announcement, I wanted to cry, because I didn't know how to explain to her that armed only with an ordinary BA in history she wasn't likely to find any job, even with her medieval French and medieval Spanish and medieval Portuguese. To my surprise, within ten days she had a job at the Newberry Library here in Chicago as assistant to the man who was curator of rare books and acquisitions librarian. So by 1989, we were pleased that our adventures with deafness seemed to have reached a happy conclusion.

Three years ago, at the age of 24, Jenny announced that she wanted a cochlear implant.

Jenny once told me that she could not wish to have been born "hearing", because that would have made her a different person. She had refused to learn sign language when we pushed, pointing out that she didn't know much Greek, and that there were far more people in the world who spoke Greek than who signed. I feel that deep down she doesn't want to fall in love with a deaf person, and deep down I fear that there will be no one else.

Most congenital deafness from Rubella does not involve malformation of the cochlea. The cochlea is that small spiral in the inner ear which transforms air vibrations into electrical impulses, which in turn register in the human brain as sound.

The cochlear implant uses an external, monaural microphone. This runs to a small external computer, worn as a body aid, which modulates its input into a 22‑channel broadcast. This in turn goes by wire to an external coil, which by magnetic induction affects a device installed inside the skull. From this, 22 micro‑miniature wires are threaded directly into the cochlea. The small computer is periodically reprogrammed by a larger computer. All this is, of course, a bionic ear.

When Jenny announced that she wanted that done to her, I flinched. Prior to Jenny, we knew of only one adult who had had it done who had been pre‑lingually deafened. This seemed a crucial distinction. In one case, one is trying to recapture a sense which one once had. It is something else to try to open up a sense which one has never had, and which is dependent on a quality of mind generally assumed to be at its peak during very early infancy.

One man tried the implant, and woke up feeling a strange sensation in his toe, when someone spoke for the first time.

Another felt something in the chest.

The young woman who begged Jenny to try it said the first thirty days would be absolute hell, but begged her to try to get past that period.

Someone else, who regained a prior ability to hear, that is to say, one who was post‑lingually deafened, wrote that she could now hear the fizz in 7‑Up again. And Jenny asked, "Do you mean those little bubbles make noise?"

Joanne determined that the single most successful surgeon in the United States for this procedure was located in New York City, and she didn't want to take any unnecessary risks. So what if it meant two or three years of commuting by air from Chicago to New York for both Jenny and herself?

Two days after the surgery, after I had left, Jenny was suddenly twitching all over, her tongue blue and hanging loosely out of her mouth, with Joanne in despair, trying to pull the surgeon out of a theater as they fled back to the emergency room. It was probably a reaction to the drug Compazine. This too passed away.

After being tuned‑up for the first time, Jenny went down to Manhattan at street level. It all seemed a terrible assault to her, she wanted the volume tuned down immediately, lower than the settings would go.

Much of the organized deaf community opposes cochlear implants. They are trying to prevent use of the procedure on infants, on the grounds that using cochlear implants denies these children the glories of the deaf world. That reaction, on the part of the deaf, is a form of pathological binding, but has very little to do with the choices real parents must make in a real world. It is astoundingly parallel to the early excesses of the black power movement. If you deny the world to an organizable group, it may embrace that denial, and sing its praises.

After the operation, Jenny could hear sounds, but for a long while she could not tell whether she was hearing a door knock or a doorbell ring or the letter "z." With available volume, she could identify a distinguishable sound for each element needed in order to decipher speech. But in many cases, she did not know what those sounds meant.

So she started on lessons all over again: hearing lessons, speech lessons, and even lessons in breath control from an opera coach. Her speech acquired greater rhythm and improved tonal quality, and lip reading is easier. She came to understand musical scales. She asked me to recite poetry for her, including "The Bells" and "Bryan, Bryan, Bryan, Bryan." Now she could appreciate Strauss, as well as Beethoven and Mozart. It is not all honey and bird‑song. She can be depressed and frustrated, but she has heard wind, and crickets, and the crunch of leaves. Her language which had been Victorian (out of books) seems to have become just a little bit corrupted. She still reads about a thousand books a year, but half of them are romances, a fact which irritates her father. She continues to enjoy the Newberry and they appear to enjoy her (she got a jump raise last year.) The lessons continue, and the story is not over.

Once Jenny was on her own, Joanne started to do a little more for other deaf children.

She was always available to hold parents' hands by telephone.

We set up an organization known as Listen, a self‑help group for parents of the hearing impaired, which is today the Illinois Division of the Alexander Graham Bell Association for the deaf.

In 1986, Joanne was Chair of the International Convention of the Deaf and Hearing‑Impaired, with more than 200 workshops strong, and with more than 1,500 participants. At that same time I got the American Bar Association and the Illinois State Advisory Committee on Civil Rights to co‑sponsor a hearing on "Rights of the Hearing Impaired."

Some time later, the New Republic recognized that the question of the rights of the deaf had become the hot issue of the day.

Joanne also served as President of the International Parents Organization. That's the organization which deals with problems of parents of the deaf around the world. But she declined to run for presidency of the Alexander Graham Bell Association for the Deaf a few years ago. Joanne, for reasons which will shortly become clear, had begun to learn to say "no."

You see, Jenny is only part of the story. This is a two‑person tale.

When Jenny was 7, Joanne decided that she was going back to work, perhaps in deaf education. That seemed a waste of a medical education to me and a psychological burden on her as well. I encouraged her to go back into medicine. Her medical career, however, had been destroyed. Her field of research had swept by her, and was long gone. Her residency had never been completed. That meant that she was not Board‑certifiable in anything.

Twenty‑five years ago, one of my law partners announced that he needed to find a doctor who was interested in a part‑time position, designing and supervising the medical aspects of a new experimental program in delivery of medical services to the home. Joanne took on that project.

We were talking about establishing what was to become the first successful modern multi‑disciplinary home health agency in the northern portion of the United States. Another family wanted to take on the job of executive direction, my father was willing to risk supplying such monies as the family had available by way of guarantee, I thought I could jump us through the legal hoops, and Joanne was prepared to make whatever medical decisions would be required. Indeed, by setting her salary low enough to be acceptable to the federal government, Joanne became the only full‑time physician in the country available to make those decisions.

Today, home health has turned into a multi‑billion dollar operation. The VNAs have come around to our way of doing things. In those days, we opened our doors and waited for thirty days for that first patient. When the first aide reached into her own pocket‑book to put sheets on a patient's bed, we knew the dream had become reality.

In her new role, Joanne pioneered the multi-disciplinary approach: nurses, social workers, physical therapists, occupational therapists, and speech therapists, all of whom were to be brought into the home. We would ultimately be running the equivalent of a 300‑plus‑bed hospital, scattered over the City of Chicago and some of its suburbs.

At one point we had to decide whether or not we were going to try to own or control this new world or whether we were going to encourage hundreds of other agencies to join in. For purely policy reasons, we elected the latter. Our agency remains a not‑for‑profit public Foundation which is privately controlled.

When we began, one did not send people out of the hospital to recover from strokes and heart operations at home. In those days, Joanne's belief that patients might recover faster at home was almost a form of heresy.

We did not foresee that some day we would be fighting with a federal government which would try to send people out of hospitals even quicker than we wanted to receive them.

In the early days, as I have already pointed out, at medical reunions, Joanne's colleagues would ask what hospital she worked at. But Joanne had to deal with many hospitals. Chicago Home Health Services, formerly Home Health Service of Chicago North, which is the institution which we created, tends to take the more difficult cases from dozens of hospitals throughout the city and suburbs.

Where do you teach, her classmates would ask. She trained generations of nurses, but almost didn't think that counted. She showed nurses how to become the practitioners they had dreamed of becoming. For a long time, Joanne really believed she could never get a medical teaching appointment, because she had not completed her residency, that was until she was appointed Clinical Assistant Professor of Preventive Medicine at the University of Illinois.

New fields created new Boards. The American Board for Quality Assurance waived her missing residency, and named her a Fellow, with honors.

But when Geriatrics became a field, that Board required certification in internal medicine as a prerequisite, so Joanne could teach the preparatory courses for the examination, but could not take the exam.

And then an interesting thing happened. I had been telling Joanne for years that she had created an entire field of medicine. Our trainees were regularly stolen. Our nursing directors became managers. Our nursing supervisors became directors. Our assistants became Supervisors. As soon as we trained someone, some other agency was prepared to seize them and promote them. Joanne's patterns became the norm. National Health Delivery Services, which established other agencies around the country, not only employed my legal services, but also incorporated Joanne's medical decisions. Everyone copied her policies. Then some of our Supervisors elected to open agencies in other states, and they in turn also trained others. "It's all your doing I said." "Nonsense," said Joanne.

In 1988 the National Association for Home Care asked Joanne to come to San Francisco to accept their designation as "Physician of the Year" and they said of Joanne the following:

"She is a pioneer in the Home Health field with her notable

innovations such as inauguration of the multi‑disciplinary

team approach to home services, including individualized

specialty therapy services in the home, as well as

laboratory services, cardiac monitoring, geriatric

assessment, psychiatric services, pediatric services and

intravenous and parental therapy."

Meanwhile, Joanne had also organized and run Medicase Case Management, Inc., adding the field of Case Management to her growing expertise.

In 1990, Joanne was elected President of the Illinois Geriatrics Society. The American Medical Association established a new Department of Geriatric Health, and named Joanne its Director. And one of the first things Joanne did was to create a policy on home health for the A.M.A., which was quickly adopted by its House of Delegates.

HCFA began to use her for brainstorming.

She established a training program for physicians in the use of home health services and new geriatrics techniques which has already been replicated in five states, with others in line. More recently she could be seen on T.V. programs, including Nightline, and has been giving speeches throughout the country.

In 1992 she was again named "Physician of the Year" (by a different organization,) and was elected President of the American Academy of Home Care Physicians.

When she served as Chair for the Illinois White House Conference on Aging, she neglected to explain that she had never previously chaired a large meeting working under Robert's rules of order, and she was nervous. One of Illinois' most long winded State Senators kept coming back to the microphone. When he appeared for the fifth time, Joanne explained to him that there were many people in the audience and that he was going to have to finish his statement or be ruled out of order. "Do you understand young woman that there is no basis in the world for your declaring me out of order at this point?" "Oh, yes," said Joanne. "I understand that fully." She banged her gavel sharply. "Out of order," she said. The audience applauded wildly.

Her bio in Whos Who in American Women has been moved to the current issue of Whos Who in the World. When she gave the keynote address last year at the International College of Surgeons' Convention, my cousin the thoracic surgeon wanted to know when she had acquired her latest specialty, but in the four current hot‑button areas of medicine she is now an acknowledged expert: Geriatrics, Case Management, Quality Assurance and Home Care.

And she is very proud of her son, who recently taught a seminar at Yale on United States relations with Latin America, while working on his PhD. Two days ago he was named Olin Pre‑Doctoral Fellow on National Security Affairs at the Center for International Affairs of Harvard University.

Joanne has given up cooking. Like many families of our generation, we do not do entertaining at home anymore. She no longer darns my socks, but maybe no one does anyone's anymore. Last year, one fan sent her an inch of clippings showing how she was being quoted. She is turning down speeches and presidencies, right and left.

And there is a young woman who still lives in our house who is often asked how in the world she learned to speak. Jenny always answers: "I don't know anything about that. I was too young to remember. You will have to ask my mother." Joanne has never told this story, so I thought that I should. And thanks to Jenny and to her mother, no one can even begin to guess how this story ends.