Friday, March 04, 2005

Purposeful Conception

A while ago I got slammed by a commenter for not very eloquently discussing the notion that parents actually consider both the physical and social consequences of procreation. In the context of this blog, I was considering the degree to which lesbians are purposeful in conceiving (that's not to say that other couples are not or don't have to be purposeful, just that lesbians, by definition, are purposeful about procreation) and in that purposefulness, must consider the fact that their kids will face some degree of discrimination by the fact that their parents are gay.

Speaking of purposeful creations, check out the following story:

Copyright 2002 The Washington Post
The Washington Post

March 31, 2002 Sunday
Final Edition

SECTION: MAGAZINE; Pg. W22

LENGTH: 8647 words

HEADLINE: A World of Their Own;
In the eyes of his parents, if Gauvin Hughes McCullough turns out to be deaf, that will be just perfect

BYLINE: Liza Mundy

BODY:

As her baby begins to emerge after a day of labor, Sharon Duchesneau has a question for the midwife who is attending the birth. Asking it is not the easiest thing, just now. Sharon is deaf, and communicates using American Sign Language, and the combination of intense pain and the position she has sought to ease it -- kneeling, resting her weight on her hands -- makes signing somewhat hard. Even so, Sharon manages to sign something to Risa Shaw, a hearing friend who is present to interpret for the birth, which is taking place in a softly lit bedroom of Sharon's North Bethesda home.

"Sharon wants to know what color hair you see," Risa says to the midwife.

The midwife cannot tell because the baby is not - quite - visible. He bulges outward during contractions, then recedes when the contraction fades. But now comes another contraction and a scream from Sharon, and the midwife and her assistant call for Sharon to keep pushing but to keep it steady and controlled. They are accustomed to using their voices as a way of guiding women through this last excruciating phase; since Sharon can't hear them, all they can hope is that she doesn't close her eyes.

"Push through the pain!" shouts the midwife.

"Little bit!" shouts her assistant, as Risa frantically signs.

And suddenly the baby is out. One minute the baby wasn't here and now the baby is, hair brown, eyes blue, face gray with waxy vernix, body pulsing with life and vigor. A boy. "Is he okay?" signs Sharon, and the answer, to all appearances, is a resounding yes. There are the toes, the toenails, the fingers, the hands, the eyes, the eyelashes, the exquisite little-old-man's face, contorted in classic newborn outrage. The midwife lays the baby on Sharon and he bleats and hiccups and nuzzles her skin, the instinct to breast-feed strong.

"Did he cry?" signs Sharon, and the women say no, he cried remarkably little.

"His face looks smushed," Sharon signs, regarding him tenderly.

"It'll straighten out," says the midwife.

Presently the midwife takes the baby and performs the Apgar, the standard test of a newborn's condition, from which he emerges with an impressive score of nine out of a possible 10. "He's very calm," she notes as she weighs him (6 pounds 5 ounces), then lays him out to measure head and chest and length. She bicycles his legs to check the flexibility of his hips; examines his testicles to make sure they are descended; feels his vertebrae for gaps.

All in all, she pronounces the baby splendid. "Look how strong he is!" she says, pulling him gently up from the bed by his arms. Which means that it is, finally, possible to relax and savor his arrival. Everyone takes turns holding
him: Sharon; her longtime partner, Candace McCullough, who is also deaf, and will be the boy's adoptive mother; their good friend Jan DeLap, also deaf; Risa Shaw and another hearing friend, Juniper Sussman. Candy and Sharon's

5-year-old daughter, Jehanne, is brought in to admire him, but she is fast asleep and comically refuses to awaken, even when laid on the bed and prodded. Amid the oohing and aahing someone puts a cap on the baby; somebody else swaddles him in a blanket; somebody else brings a plate of turkey and stuffing for Sharon, who hasn't eaten on a day that's dedicated to feasting. Conceived by artificial insemination 38 weeks ago, this boy, Gauvin Hughes McCullough, has arrived two weeks ahead of schedule, on Thanksgiving Day.

"A turkey baby," signs Sharon, who is lying back against a bank of pillows, her dark thick hair spread against the light gray pillowcases.

"A turkey baster baby," jokes Candy, lying next to her.

"A perfect baby," says the midwife.

"A perfect baby," says the midwife's assistant.

But there is perfect and there is perfect. There is no way to know, yet, whether Gauvin Hughes McCullough is perfect in the specific way that Sharon and Candy would like him to be. Until he is old enough, two or three months from now, for a sophisticated audiology test, the women cannot be sure whether Gauvin is -- as they hope -- deaf.

Several months before his birth, Sharon and Candy -- both stylish and independent women in their mid-thirties, both college graduates, both holders of graduate degrees from Gallaudet University, both professionals in the mental health field -- sat in their kitchen trying to envision life if their son turned out not to be deaf. It was something they had a hard time getting their minds around. When they were looking for a donor to inseminate Sharon, one thing they knew was that they wanted a deaf donor. So they contacted a local sperm bank and asked whether the bank would provide one. The sperm bank said no; congenital deafness is precisely the sort of condition that, in the world of commercial reproductive technology, gets a would-be donor eliminated.

So Sharon and Candy asked a deaf friend to be the donor, and he agreed.

Though they have gone to all this trouble, Candy and Sharon take issue with the suggestion that they are "trying" to have a deaf baby. To put it this way, they worry, implies that they will not love their son if he can hear. And, they insist, they will. As Sharon puts it: "A hearing baby would be a blessing. A deaf baby would be a special blessing."

As Candy puts it: "I would say that we wanted to increase our chances of having a baby who is deaf."

It may seem a shocking undertaking: two parents trying to screen in a quality, deafness, at a time when many parents are using genetic testing to screen out as many disorders as science will permit. Down syndrome, cystic fibrosis, early-

onset Alzheimer's -- every day, it seems, there's news of yet another disorder that can be detected before birth and eliminated by abortion, manipulation of the embryo or, in the case of in vitro fertilization, destruction of an embryo. Though most deafness cannot be identified or treated in this way, it seems safe to say that when or if it can, many parents would seek to eliminate a disability that affects one out of 1,000 Americans.

As for actively trying to build a deaf baby: "I think all of us recognize that deaf children can have perfectly wonderful lives," says R. Alta Charo, a professor of law and bioethics at the University of Wisconsin. "The question is whether the parents have violated the sacred duty of parenthood, which is to maximize to some reasonable degree the advantages available to their children. I 'm loath to say it, but I think it's a shame to set limits on a child's potential."

In the deaf community, however, the arrival of a deaf baby has never evoked the feelings that it does among the hearing. To be sure, there are many deaf parents who feel their children will have an easier life if they are born hearing. "I know that my parents were disappointed that I was deaf, along with my brother, and I know I felt, just for a fleeting second, bad that my children were deaf," says Nancy Rarus, a staff member at the National Association of the Deaf. Emphasizing that she is speaking personally and not on behalf of the association, she adds, "I'm a social animal, and it's very difficult for me to talk to my neighbors. I wish I could walk up to somebody and ask for information. I've had a lot of arguments in the deaf community about that. People talk about, 'The sky's the limit,' but being deaf prevents you from getting there. You don't have as many choices."

"I can't understand," she says, "why anybody would want to bring a disabled child into the world."

Then again, Rarus points out, "there are many, many deaf people who specifically want deaf kids." This is true particularly now, particularly in Washington, home to Gallaudet, the world's only liberal arts university for the deaf, and the lively deaf intelligentsia it has nurtured. Since the 1980s, many members of the deaf community have been galvanized by the idea that deafness is not a medical disability, but a cultural identity. They call themselves Deaf, with a capital D, a community whose defining and unifying quality is American Sign Language (ASL), a fluent, sophisticated language that enables deaf people to communicate fully, essentially liberating them -- when they are among signers
-- from one of the most disabling aspects of being deaf.

Sharon and Candy share the fundamental view of this Deaf camp; they see deafness as an identity, not a medical affliction that needs to be fixed. Their effort -- to have a baby who belongs to what they see as their minority group -- is a natural outcome of the pride and self-acceptance the Deaf movement has brought to so many. It also would seem to put them at odds with the direction of reproductive technology in general, striving as it does, for a more perfect normalcy.

But the interesting thing is -- if one accepts their worldview, that a deaf baby could be desirable to some parents -- Sharon and Candy are squarely part of a broader trend in artificial reproduction. Because, at the same time that many would-be parents are screening out qualities they don't want, many are also selecting for qualities they do want. And in many cases, the aim is to produce not so much a superior baby as a specific baby. A white baby. A black baby. A boy. A girl. Or a baby that's been even more minutely imagined. Would-be parents can go on many fertility clinic Web sites and type in preferences for a sperm donor's weight, height, eye color, race, ancestry, complexion, hair color, even hair texture.

"In most cases," says Sean Tipton, spokesman for the American Society of Reproductive Medicine, "what the couples are interested in is someone who physically looks like them." In this sense Candy and Sharon are like many parents, hoping for a child who will be in their own image.

And yet, while deafness may be a culture, in this country it is also an official disability, recognized under the Americans With Disabilities Act. What about the obligation of parents to see that their child has a better life than they did?

Then again, what does a better life mean? Does it mean choosing a hearing donor so your baby, unlike you, might grow up hearing?

Does it mean giving birth to a deaf child, and raising it in a better environment than the one you experienced?

What if you believe you can be a better parent to a deaf child than to a hearing one?

"It would be nice to have a deaf child who is the same as us. I think that would be a wonderful experience. You know, if we can have that chance, why not take it?"

This is Sharon, seven months pregnant, dressed in black pants and a stretchy black shirt, sitting at their kitchen table on a sunny fall afternoon, Candy beside her. Jehanne, their daughter, who is also deaf, and was conceived with the same donor they've used this time, is at school. The family has been doing a lot of nesting in anticipation of the baby's arrival. The kitchen has been renovated, the back yard landscaped. Soon the women plan to rig a system in which the lights in the house will blink one rhythm if the TTY -- the telephonic device that deaf people type into -- is ringing; another rhythm when the front doorbell rings; another for the side door. They already have a light in the bedroom that will go on when the baby cries.

In one way, it's hard for Sharon and Candy to articulate why they want to increase their chances of having a deaf child. Because they don't view deafness as a disability, they don't see themselves as bringing a disabled child into the world. Rather, they see themselves as bringing a different sort of normal child into the world. Why not bring a deaf child into the world? What, exactly, is the problem? In their minds, they are no different from parents who try to have a girl. After all, girls can be discriminated against. Same with deaf people. Sharon and Candy have faced obstacles, but they've survived. More than that, they've prevailed to become productive, self-supporting professionals. "Some people look at it like, 'Oh my gosh, you shouldn't have a child who has a disability,' " signs Candy. "But, you know, black people have harder lives. Why shouldn't parents be able to go ahead and pick a black donor if that's what they want? They should have that option. They can feel related to that culture, bonded with that culture."

The words "bond" and "culture" say a lot; in effect, Sharon and Candy are a little like immigrant parents who, with a huge and dominant and somewhat alien culture just outside their door, want to ensure that their children will share their heritage, their culture, their life experience. If they are deaf and have a hearing child, that child will move in a world where the women cannot fully follow. For this reason they believe they can be better parents to a deaf child, if being a better parent means being better able to talk to your child, understand your child's emotions, guide your child's development, pay attention to your child's friendships. "If we have a hearing child and he visits a hearing friend, we'll be like, 'Who is the family?' " says Candy. "In the deaf community, if you don't know a family, you ask around. You get references. But with hearing families, we would have no idea."

They understand that hearing people may find this hard to accept. It would be odd, they agree, if a hearing parent preferred to have a deaf child. And if they themselves -- valuing sight -- were to have a blind child, well then, Candy acknowledges, they would probably try to have it fixed, if they could, like hearing parents who attempt to restore their child's hearing with cochlear implants. "I want to be the same as my child," says Candy. "I want the baby to enjoy what we enjoy."

Which is not to say that they aren't open to a hearing child. A hearing child would make life rich and interesting. It's just hard, before the fact, to know what it would be like. "He'd be the only hearing member of the family," Sharon points out, laughing. "Other than the cats."

"Did you weigh yourself?"

"What?"

"Did you weigh yourself?"

"Yes," says Sharon. It's a few weeks before the baby's birth, and Sharon has taken the Metro to Alexandria for a prenatal checkup. Wearing a long black skirt and loose maroon blouse, she has checked in at the BirthCare & Women's Health center and has been ushered into an examining room, where she now shifts, bulky, in her seat.

"How are you feeling?" the midwife asks.

"Tired today," says Sharon. Often, Sharon brings her hearing friend Risa Shaw to interpret at checkups, but today she's relying on her own ability to speak and read lips. Reading lips is something Sharon does remarkably well. She developed the skill on her own. Growing up, she was also enrolled in speech therapy, where a progression of therapists fitted her with hearing aids, shouted into her ear, sent her home to practice talking in front of a mirror because her "a" was too nasal, and generally instilled in her, she says now, a sense of constant failure. On one level, the therapy worked: When she speaks, she does so with fluency and precision.

But even the following small exchange shows what an inexact science lip-reading is. "This is our first visit?" the midwife says, looking at her chart.

"What?" Sharon replies, peering to follow the movement of her tongue and teeth and lips.

"This . . . is . . . my . . . first . . . visit . . . with . . . you," says the midwife, speaking more slowly.

"Oh," says Sharon, who has seen other midwives on previous visits. "Yes."

"Let's see -- we are at 36 weeks, huh? So today we need to do an internal exam and also do the culture for beta strep. You're having a home birth, right? So do you have the oxygen?"

"What?"

"The oxygen?"

"What?"

The midwife gestures to indicate an oxygen tank, one of the supplies they need to have on hand at home.

"No."

This gives some sense of what life has been like for Sharon, who was raised in what's known as the oralist tradition. Which is to say, she was raised to function in the hearing world as best she could, without exposure to sign language or to other deaf people, except her mother. Like her mother, Sharon was born with some residual hearing but experienced hearing loss to the point where, at 8 or so, she was severely deaf. Her father, Thomas, a professor of economics at the University of Maine, can hear, and so can her younger sister, Anne. In this family Sharon was referred to as "hearing impaired" or "hard of hearing," rather than "deaf." She attended public school in Bangor; there was a special classroom for deaf kids, and Sharon stayed as far away from it as possible.

"I find it very hard to say now," says Sharon. "Sometimes my speech therapist would want me to meet the other deaf children, and it was an embarrassment. I didn't want to be identified with them. I didn't want my friends to look at me as if I was different."

Those friendships were relatively easy when she was young, riding bikes and running around, but became much harder in adolescence, where so much of friendship is conducted verbally, in groups, which are impossible to lip-read. She got by. "I played field hockey, I did layout for the yearbook, it looked like I did fine, but inside I always felt there was something wrong with me. I remember someone would ask what kind of music I liked, and I didn't know what the cool answer would be. I used to make my sister write down the words to the most popular songs."

She grew up feeling that her sister was normal and that she was flawed, a feeling, she says, exacerbated by her father, who pushed her to speak. She knows he meant well, and Sharon functioned so ably, it's easy to see why his expectations for her were high. But those standards filled her with a desire to meet them and a chronic sense of falling short. "Once when I was 11 or 12, my family went to a restaurant to eat, and I wanted to have milk to drink, and I was trying to tell the waitress and she couldn't understand me. I think I tried maybe two or three times, and she kept looking at me like I was speaking Chinese. I looked at my father like: 'Help me out here.' And he was: 'Go ahead. Say it again.' "

Another time, she says, her father told her that if she ever had children, she should check with a geneticist to assess the risk that her baby, like her, would be deaf. "I felt put down, like it would be bad if my child was deaf, or it was a negative thing to bring a deaf child into the world," she says. "I took it personally."

And high school, compared with what came later, was easy. Having done well academically, Sharon enrolled at the University of Virginia. She tries to convey the numbing isolation of that experience; of being at a huge college full of strangers; being from out of state; being deaf; straining to catch names; feeling at sea in dorms or at parties; sitting at the front of big classes, tape-recording the lecture and then taking the tape to a special office to be typed, then returning, alone, to her room with a 30- or 40-page transcript. For a hearing person, perhaps the best analogy would be to imagine yourself in a foreign country where you understand the language only slightly; where comprehension will not get better no matter how hard you try. "I got," she says, "very tired of that."

She gravitated to a major in medical ethics, and in that department she met a professor who urged her to learn sign and meet some deaf people. Sharon resisted; he persisted, pointing out that if she learned sign, she could interview deaf people as part of her research. So she relented, went to Gallaudet for a summer of sign lessons, and realized that her professor's argument had been a ploy. "The first day I got there, I knew that it wasn't about taking it for school. It was for myself," she says. She returned to U-Va., graduated, got an internship in the bioethics department at the National Institutes of Health. But her heart and mind were in continuing her sign lessons and becoming part of the deaf community. The writer Oliver Sacks, in his book about deafness, Seeing Voices, has described American Sign Language, for deaf people encountering it for the first time, as coming home.

"It was the best time," she says. "There were so many wonderful things about it. About deaf people, about signing. People understood me. I didn't have to explain myself. I didn't have to fake it. It was a positive thing to be deaf at Gallaudet."

"That summer," she continues, beginning to weep, "really changed my life, my hopes and my dreams and my future. It changed everything."

"Before that," she says, "I couldn't think about the future. I felt so lost."

Some of this lostness had to do with her sexual identity. She had never dated men much, and at Gallaudet she became increasingly aware of herself as a lesbian. A fellow student recognized this, took her out to some bars, helped her come out. She went on to pursue a master's in the Gallaudet counseling department; it was during that period that she met Candy, a slender, vivacious woman with a taste for leather jackets and hip, flared trousers. At the time, Candy drove a Honda Prelude with a sound system that had -- deaf people experience music through vibrations -- really hot woofers.

Unlike Sharon, Candy had been brought up signing, the child of deaf parents, but that doesn't mean her upbringing was easier. Neither of her parents finished high school. Her father was a printer, the classic deaf profession; historically, to be deaf often meant to be relegated to industrial work -- factories and print shops being among the few places where it is an advantage not to hear. They lived in northern California, where for a while she was put in a special deaf classroom in an inner-city Oakland school, where signing was not permitted in class. Candy was so bright she worked through the entire third-grade math textbook in a weekend, but she felt the expectations of her were very low (some kids with deafness are also born with other disorders, so the range of abilities in a deaf classroom is very broad). She transferred to a special school for deaf kids, but -- finding that easy, too -- transferred again to a hearing high school, where she attended classes with an interpreter. But an interpreter can't help a high schooler make friends. No teenage conversation can survive the intrusion of third-party interpretation, and Candy, unlike Sharon, was not able to speak for herself. Profoundly deaf from birth, she had no residual hearing to help her figure out how a voice should sound. Even with speech therapy, she'd learned early on that hearing people could not understand her when she spoke. "So," she says now, "I stopped talking."

At lunch the interpreter would take a break, and Candy, unable to talk to anyone, would go to the library and do her homework. On weekends, she studied or worked at the library shelving books.

"I was the perfect student," she says, so from high school she went to the University of California at Berkeley. Like Sharon, she found college grindingly lonely. Her first year she met Ella Mae Lentz, a deaf poet who composes in ASL. Lentz suggested Candy transfer to Gallaudet. Like Sharon, Candy felt a deaf school would be academically inferior. But, Lentz pointed out, a crucial part of college is having friends. Candy had already come out as a lesbian; her mother was upset, so it occurred to Candy that 3,000 miles away might be a good place to be. So she transferred, and like Sharon, has never looked back. The women, who have been together for nearly 10 years, moved in with each other, then bought a house with their close friend Jan DeLap. At some point Sharon spoke of a dream she'd once had but dismissed: to have children. She assumed they couldn 't, not because they were deaf but because they were lesbians.

It is not Candy's nature to dismiss dreams. " 'Can't' isn't in my vocabulary, " she says. So they found a donor, a friend of Candy's who comes from five generations of deafness. In Sharon's family there are four generations on her mother's side. Once she was pregnant, a genetic counselor predicted that based on these family histories, there was a 50-50 chance her child would be deaf. Heads for a deaf child, tails for hearing.

The very first time -- with Jehanne -- the coin came up heads.

Candy usually signs with both hands, using facial expressions as well as signs. This is all part of ASL, a physical language that encompasses the whole body, from fingers to arms to eyebrows, and is noisy, too: There is lots of clapping and slapping in ASL, and in a really great conversation, it's always possible to knock your own eyeglasses off.

When she drives, though, Candy also signs one-handed, keeping the other hand on the wheel. Chatting with Sharon, she maneuvers her Volvo through Bethesda traffic and onto I-270, making her way north toward Frederick, home to the Maryland School for the Deaf. State residential schools have played a huge role in the development of America's deaf community. Historically, deaf children often left their homes as young as 5 and grew up in dorms with other deaf kids. This sometimes isolated them from their families but helped to create an intense sense of fellowship among the deaf population, a group that, though geographically spread out, is essentially a tribe, a small town, a family itself.

Now that people are more mobile, families with deaf children often relocate near a residential school for the deaf, where the young children are more likely to be day students. Jehanne is one; today she's waiting for them in a low corridor inside the elementary school building at MSD, petite, elfin, dimpled, with tousled brown hair and light brown, almost amber eyes. Essentially, the baby Sharon is carrying represents a second effort that they're making because the first was so successful. (Candy tried to have their second child, but a year of efforts didn't take.) At her own infant audiology test, Jehanne was diagnosed as profoundly deaf. In their baby book, under the section marked "first hearing test," Candy wrote, happily, "Oct. 11, 1996 -- no response at 95 decibels -- DEAF!"

This afternoon, Jehanne greets her mothers and begins immediately to sign. She has been signed to since birth and, unlike her mothers, has been educated from the start in sign. At 5 she is beginning to read English quite well; when they're riding in the car, she'll notice funny shop names, like Food Lion and Four Eyes. But she is also fluent in ASL, more fluent even than Sharon.

The women have arrived to visit Jehanne's kindergarten classroom, which in most ways is similar to that of any other Maryland public school; the kids are using flashcards to learn about opposites, conducting experiments to explore concepts like wet and dry, light and heavy. The classes are small, and teachers are mostly deaf, which is something new; years ago, even at MSD, deaf people weren't permitted to teach the young kids, because it was believed that sign would interfere with their learning to read. Now that's all changed. Sign is used to teach them reading. They learn science in sign; they sign while doing puzzles, or gluing and pasting, or coloring, or working in the computer lab.

There is a speech therapy class, but it's optional, and a far cry from the ones that Sharon and Candy remember, where laborious hours were spent blowing on feathers to see the difference between a "b" and a "p." In general, Sharon and Candy have tried not to make what they see as the mistakes their own parents did. Sharon, for example, resents having been made to wear hearing aids and denied the opportunity to learn sign, while Candy -- who really wanted to try a hearing aid when she was little -- was told by her father than she couldn't because it would be expensive and pointless, anyway. Trying to chart a middle course, they let Jehanne decide for herself whether she wanted to try a hearing aid; she did, one summer when attending camp at Gallaudet. It was hot pink. She wore it about a week.

Similarly, they left it up to her whether to take speech therapy; since she is much more profoundly deaf than Sharon, it is unlikely that she will ever have speech as clear as Sharon's. But she wanted to take the class; when they asked why, she told them that it was fun.

Now they understand why. When Jehanne and another friend are pulled out for speech class on this day, they make their way down the hall to a classroom where the children enact a mock Thanksgiving dinner. The teacher passes out plastic turkey and mashed potatoes and bread; as they pretend to eat, enjoying the role-playing, the teacher signs and speaks.

"Now we're going to do what with our napkins?" she says as the two girls look up at her. "Put it in our l-l-l-l-l-ap." She exaggerates the sound, so they can see how an "l" is made. The girls learn speech by watching her and then trying to imitate the tongue and lip movements they see. At such a young age, the sounds that emerge are vague and tentative.

"Now we need a knife," she says, and Jehanne makes a sound like "nuh."

"Knife."

"Nuh."

"Would you like some water?"

Jehanne makes a good-faith effort to say "yes, please," pursing her lips and wiggling her tongue to come out with a "pl."

Candy and Sharon watch intently, concerned not about Jehanne's speech but about the teacher's style of signing. At one point she tells Jehanne to lay out her napkin, but because the sign isn't the classic ASL sign, Jehanne looks at her blankly. "Oh well," says Sharon later. "It's good for her to know that not everybody is a fluent signer." They inspect the computer lab, chatting with the school webmaster, whom they know; he and his wife are the parents of one of Jehanne's classmates. For Sharon and Candy, one of the great advantages of having a deaf child is that it gives them a built-in social life. Like most parents, they socialize a lot with the parents of their children's friends, and at MSD, many of the parents are deaf. They also see the school as one way to ensure that Jehanne doesn't endure the loneliness and isolation that they did. By raising her among deaf children, they feel she's getting a much stronger start in life.

And they are every bit as ambitious for Jehanne as any parent would be for a child. Afterward, the women talk to the principal, who is also deaf. They tell her they are happy with the school, with a few caveats: They wish she had a little more self-directed time; they wish the weekly written reports were more detailed. Jehanne, who is clearly an outstanding student, is also just a tiny bit klutzy, no big deal, but even so they'd like to hear some details from the gym teacher. Her last report, for gym, was checked "needs improvement." "Needs improvement? What does that tell me?" signs Candy. "We've taken her to dance class, soccer; we swim each week, she does yoga! What more do you want us to do? " Laughing, Sharon and Candy talk about the fact that Jehanne is one of those kids who haven't figured out how to swing; she's still trying to get the pumping motion. It's an interesting moment. To most parents, hearing would seem a much more important ability, in the grand scheme of things, than pumping. But that's not how Candy and Sharon see it.

"She's a sweetheart," says the principal soothingly. "She's a role model. She 's in with such a nice group of friends." The principal has known most of these kids almost since the day they were born. At MSD, deaf infants qualify for a weekly morning class. When they are 2, they go to preschool. Their education -- with small classrooms, extra teachers, transportation -- is free, paid for with public funds.

So advantageous is MSD, in fact, that one of the things Candy and Sharon think about is how much more a hearing child would cost. If the baby is hearing, they'll have to pay for day care. For preschool. Even, if they find they don't agree with the teaching philosophy of the public schools, for private school. "It's awful to think that, but it'll be more expensive!" Sharon acknowledges.

But -- while deaf children do receive some financial advantages -- they point out that deaf children give back, in ways that are complex and impossible to predict. Take Candy and Sharon themselves: Both work at home as counselors, seeing deaf clients and, often, hearing family members. Not only do they provide the deaf with clear, accessible mental health care; Sharon also finds that hearing patients sometimes open up more for a therapist who is not herself "perfect." And hearing parents of deaf children are often "relieved to come and see a deaf therapist," Sharon finds. "They're like, 'Oh, you went to college! Oh, that means my children can do that!' They're afraid the child will be on the street selling pencils."

So sure, Jehanne's education may cost the public more. But deaf children, Sharon argues, make a society more diverse, and diversity makes a society more humane. Plenty of individuals and groups receive public support, and if you start saying which costs are legitimate and which aren't, well, they believe, it 's a slippery slope.

"Do you think this baby's hearing?" Candy asks Sharon, afterward, when they are having lunch in downtown Frederick.

"I don't know," says Sharon. "I can say that I hope the baby's deaf, but to say I feel it's deaf, no." They are talking about an old saying in the deaf
community: If the mother walks into a place with loud music, and the baby moves, the baby is hearing. "If you base it on that, I do think it's deaf," says Sharon.

"I just say to myself that the baby's deaf," Candy says. "I talk as if the baby's deaf. If the baby's hearing, I'll be shocked."

"You better be prepared," Sharon tells her. "With Jehanne, I prepared myself. It could happen." Thinking about it, she speculates: "A hearing child would force us to get out and find out what's out there for hearing children. Maybe that would be nice."

Candy looks at her, amazed.

"It's not that it's my preference," says Sharon. "But I'm trying to think of something positive."

Exactly two weeks after his birth, Gauvin (pronounced Go-VAHN, as in French) is sleeping in a Moses basket, luminous and pink and tiny. He continues to sleep, undisturbed, when Jan DeLap turns on the disposal and Candy loudly grates cheese with the salad shooter. But when Sharon begins to set the table, opening cupboards and clattering plates, he shifts, clenches his fists and stretches. Jehanne pretends to test his hearing, making a noise like buh-buh-buh, and he writhes a little. When she is relaxed and around people she loves -- as now -- Jehanne makes noises all the time, a low, constant, happy humming.

The more relaxed a deaf household is, the noisier it is. Around hearing people, deaf people are careful to control the sounds they make, but when they 're alone they can let go. When Sharon wants Candy, she calls her by stomping the floor. When the cats get on the table, Jan lets out a hair-raising whoop. It doesn't always work. One of the cats, they believe, is hard of hearing. The veterinarian disagrees. "He thought we were projecting," Sharon says.

Dinner tonight is burritos. Gauvin, who is turning out to be a very easy baby, is still sleeping, so they can eat uninterrupted and chat with Jehanne. In school, Jehanne's class is reading The Very Busy Spider, which involves animals saying "baaa" and "neigh" and "meow," sounds that none of the kids has heard. And so today, Jehanne tells them, they learned about animal sounds.

"What does a duck say?" asks Candy.

"Oink, oink," signs Jehanne.

"No!" signs Candy, amused. "Quack! Quack!"

"What does a rooster say?" she asks. Jehanne is stumped, and so, for a minute, is everybody else. "Oh yeah!" somebody remembers. "Cock-a-doodle-doo!"

After dinner, it's story time. The house is full of books. Downstairs are shelf after shelf of novels, nonfiction and clinical textbooks, even a shelf dedicated to the English language, everything from diction-aries of English usage to the Pocket Dictionary of American Slang. They are constantly buying books for Jehanne; tonight they're reading Elizabite: Adventures of a Carnivorous Plant and Blueberries for Sal.

Candy is tonight's designated reader. She signs the stories in ASL, sometimes with both hands, sometimes with one and using the other to point to the words. Candy is such a beautiful, vivid signer that the stories seem to possess her, and she them. Hands fluttering, face mobile and focused on Jehanne, Candy is Little Sal's mother putting berries in her tin pail, plink plank plunk; she is Mother Bear, separated from her cub; she is both of the babies, Little Sal and Little Bear, looking for their moms. Jehanne watches, rapt; Jan watches, rapt; Sharon, who is now breast-feeding Gauvin on a couch in the living room, watches, rapt. A deep contentment falls over the household. "And the bear went over and she heard the rumbling of Little Bear in the bushes, and she knew that it was her baby, and they went down the mountain, eating berries and storing them up for winter!" Candy finishes.

After Jehanne goes to bed, they take out an inking kit to record Gauvin's footprint in his baby book. Like most second babies, Gauvin doesn't have the extensive archives that his older sibling does. His baby book is still somewhat sparse, whereas Jehanne's is crammed full of tiny writing. Under "baby's first words," Candy noted that at about 11 months -- the time most babies would say their first word -- Jehanne signed "fan." Soon came "swing," and "more," and "light."

In the section where the parents are to write their aspirations for the baby, Candy wrote: "Jehanne can plan her own future. Seeing her happy is all that is important to us."

It is an open question, however, to what extent Jehanne can plan her own future. Candy and Sharon say that it will be okay with them if she goes to Gallaudet, but okay, too, if she wants to go to a hearing college. Though it would be harder for her to participate, say, in student government or athletics or dorm life, they think otherwise she would manage. And after that? The opportunities, they believe, are unlimited. Recently, though, Jehanne and Sharon were talking about astronauts, and Jehanne asked whether a deaf person can be an astronaut. Sharon was obliged to tell her no. Astronauts, she explained, need to communicate by radio. "That's not nice!" Jehanne said. "It's not nice that deaf people can't be astronauts!" Sharon told her maybe someday astronauts will be able to use video.

But with the exception of that -- and, probably, of the classic childhood ambition, president -- they do feel that Jehanne can be what she wants. She has electronic communications to help her;

e-mail has made a huge difference to deaf people. She'll have what they feel is the solid foundation of an education anchored by sign. They think she'll have what they never had: strong self-esteem, a powerful belief in herself. She'll have the considerable legal protection of the Americans With Disabilities Act, which forbids employment discrimination.

Not that the ADA can solve everything. Candy, who is in the final stages of getting her doctorate in psychology, needs to do a yearlong internship at a hospital or other workplace. She plans to counsel both deaf and hearing patients; plans, in short, to be a psychologist like any other. This means two things. It means an interpreter will need to be hired. It also means she is competing mostly with hearing applicants. When she sends off her resume, there is no indication she is deaf; at Gallaudet, most of the students in her graduate program are hearing people who plan to work with the deaf. But if she gets an interview, she has to e-mail the prospective employer, to discuss her need for an interpreter.

"If I go and they aren't interested," she says, "how do I know why? It's hard sometimes to know whether discrimination is taking place, or not."

"Some deaf people think it's a hard life," reflects Candy, whose grandfather wanted to be a pilot but was prevented by deafness. "But some people think the world is open."

"Did you ever want to be a policeman?" she asks Jan, whose father was a cop. Jan, who is 60, had a deaf mother but a hearing father, so she grew up around hearing relatives, and from them was exposed to music. When she was 7, she saw a movie about an opera singer. "I told my friends that I wanted to be an opera singer," Jan recalls. "My cousin was like, 'You can't be an opera singer. You're deaf!' I think that at that point I thought, 'I'm deaf now but maybe I can be hearing later.' "

"I remember wanting to be a lawyer," says Candy. "And then my teacher said that a deaf person can't do it. And later it wasn't my area of interest."

Now, Jan mentions, there are quite a few deaf lawyers. They have a friend who is one. In the courtroom she makes use of something called real-time captioning. There are technical advances every day. But technology doesn't help a deaf person who is standing next to a hearing person who can't sign. It will never completely bridge what is, still, an enormous gap. Jehanne has a neighbor she plays with, a hearing girl she's known almost since birth. The mothers agree that as they get older, it's getting harder and harder for the girls to communicate, and they get together less and less.

"What I wonder," Jan says at one point, "is whether they'll eliminate the deaf gene. Maybe they'll be able to pluck out the deaf gene. Maybe there will be no more deaf people."

They sit contemplating this. It isn't out of the question. Members of another disabled group were taken by surprise when the gene that causes their condition was discovered: Now, a child with achondroplasia, or disproportionately short arms and legs -- also known as dwarfism -- can be identified in utero. And, if the parents don't want a child with dwarfism, the fetus can be aborted. The community of "little people," which has its own association, its own Web site, a strong tradition in Hollywood, and a powerful fellowship, has been left contemplating its children destroyed, its numbers dwindling, its existing members consigned to a narrowing life of freakishness and isolation. Such a fate could -- it's possible -- befall the deaf. The situation illustrates how in this country, at this cultural moment, disabled people are exposed to two powerful but contradictory messages. One says: You are beautiful. You are empowered. The other says: You are deficient. You may be snuffed out.

"Maybe there will be no more deaf children," Jan says.

"Except," says Candy, "for those of us who choose to make more deaf children. "

As the weeks go by, Gauvin starts staying awake more. His eyes, blue and wide, start tracking more; he watches his mothers, and Jehanne, with an intensity that they believe is characteristic of deaf children. They sign to him in deaf "motherese"; like a hearing mother speaking in a high-pitched, singsong voice, they sign slowly, with exaggerated gestures. In mid-December they take him to Gallaudet for a show. In the auditorium there are people signing across the room, people signing from the floor to people in the balcony.

In this group Gauvin is admired like a crown prince. Friends, colleagues and former classmates come to peek inside the sling in which Sharon is carrying him, and, inevitably, to inquire whether he is deaf. "How many of you are deaf?" asks the emcee, and Jan -- half-joking, half-

serious -- motions to Sharon to raise Gauvin's hand.

There are many more admirers: In December the sperm donor comes for a visit, as he does about twice a year. Then, after Christmas, Sharon's father, Thomas, arrives. Sharon's mother died of breast cancer not long after Sharon graduated from U-Va., so he is here with the woman who is now his companion, Caroline Dane. Both of them are hearing. Also visiting are Candy's mother, Diana, who is deaf; Sharon's sister, Anne, who is hearing; Anne's boyfriend, Paul, who is hearing. That means there are four hearing people in the house and five deaf people. Plus Gauvin, whatever team he ends up on. Jehanne moves from one group to another, but usually gravitates toward people who are signing, because she has no way, save by gesturing, to communicate with her hearing relatives.

Sharon is the pivot point, the only one who can translate, which is exhausting for her. She has to keep lip-reading and talking and signing, almost simultaneously. When an interpreter arrives to interpret for this article, the entire group -- all 10 of them -- crowds into the living room and sits, talking intently, for two hours.

It is the first time they have been able to fully express themselves to one another, the first time Sharon has ever had someone to interpret a conversation with her own family. The first time she didn't have to strain to understand what her father said, or her sister. Much of it is funny and fond: It turns out that Thomas, cleaning out his attic, recently found some of the song lyrics that Anne transcribed for Sharon, back when both were girls. "You saved those?" says Sharon. "Why?" Then Anne remembers how she would interpret for Sharon on the phone.

"I remember when that boy asked you to the prom," says Anne, who is six years younger than Sharon, her hair lighter brown, her face illuminated by the same quizzical expressions, the same seriousness, the same faintly Gallic beauty.

"You interpreted that?" Sharon says, laughing.

"Yes!" says Anne, who also remembers that whenever Sharon didn't want to go out with a boy, Anne was the one who had to tell him.

"Do you remember that time we were having an argument, and I called you 'deaf '?" Anne says. "You weren't happy. A lot has changed."

Together, the sisters try to excavate some of their mother's history, find out why she never signed: Both Sharon and her mother struggled to lip-read each other, mother and daughter divided rather than united by deafness, their common bond. Eventually Sharon confronts her father with what she sees as the central mistake her parents made in her upbringing. "I can look back now," she signs, "and say that things would have been different if I had learned to sign, or been exposed to deaf culture. Growing up, if I got 60 percent of a conversation, I felt like that was good. Some of those behaviors are still with me. In groups of signers, they may be signing really fast and even if I'm not getting it all I'm like, 'This is good enough.' I still don't like asking people to repeat. I'm just used to not getting everything."

Later, sitting with her father, she asks, "Did you feel bad when I said that I wished it had been different when I was growing up?"

"No," says her father, a solid, deliberative man with glasses who has brought Jehanne a University of Maine sweat shirt. "We all think about that. We all feel that way about our parents."

In trying to know how to think about Sharon and Candy's endeavor, there are any number of opinions a person might have. Any number of abstract ideas a person might work through in, say, an ethics course. Are the women being selfish? Are they inflicting too much hardship on the child? How does one think of them compared with, say, a mother who has multiple embryos implanted in the course of fertility treatments, knowing that this raises the likelihood of multiple births and, with it, birth defects in some or all of the babies? Morally, how much difficulty can a parent impose on a child in order to satisfy the desire to have a child, or to have a certain kind of child?

A person can think about this, and think about it, but eventually will run up against the living, breathing fact of the child herself. How much difficulty have Sharon and Candy imposed on Jehanne? They haven't deafened her. They've given life to her. They've enabled her to exist. If they had used a hearing donor, they would have had a different child. That child would exist, but this one wouldn't. Jehanne can only exist as what she is: Jehanne, bright, funny, loving, loved, deaf.

And now what about Gauvin, who, at 3 months, already resembles his sister? He has the same elfin face shape, the same deep dimples when he smiles. On his head is a light fuzz of hair; bulkier now, alert and cheery, he's wearing gray overalls and groovy red leather sneakers. The question that will be answered this February afternoon, at Children's National Medical Center, is whether Gauvin, like Jehanne, is deaf. Whether the coin has landed on the same side twice.

By now, Gauvin has had an initial hearing screening, which he failed. They considered this good news, but not conclusive. From there he was referred to this one, which is more sophisticated. The preliminaries take awhile. Sharon lays Gauvin in a crib and a technician applies conductive paste at points around his head, then attaches electrodes to the paste. He needs to be asleep for the test, in which microphones will be placed in his ears and a clicking noise sent through the wires. Through the electrodes, a machine will monitor the brain response. If the waves are flat, there is no hearing. He stirs and cries, so Sharon breast-feeds him, wires dangling from his head, until he falls asleep. The technician slips the microphone in his ear, turns on the clicking noise -- up and up, louder and louder -- and the two women look at the computer screen.

Even at 95 decibels, a sound so loud that for hearing people it's literally painful, the line for the left ear is flat. But there is a marked difference in the right. For softer sounds the line is flat, but at 75 decibels there is a distinct wave. The technician goes to fetch the doctor, and the mothers contemplate their sleeping son, who, it appears, might be neither deaf nor hearing but somewhere in between.

The doctor, Ira Weiss, bustles in; he is a white-haired, stocky man, jovial and accustomed to all sorts of parents, hearing and deaf, happy and sobbing.

The technician points to the wave and suggests that perhaps it represents some noise that Gauvin himself was making. "No," says the doctor, "I think it's not just noise." Sharon looks up at Candy and lets out a little breath. The doctor disappears to get a printout of the results, then returns, reading it. Gauvin, he says, "has a profound hearing loss in his left ear and at least a severe hearing loss in his right ear."

"It does appear," he adds, "that his right ear has some residual hearing. There might be some usable hearing at this time. Given the mother's history, it will probably get worse over time. If you want to take advantage of it, you should take advantage of it now. Right now it's an ear that could be aided, to give him a head start on spoken English. Obviously, he's going to be a fluent signer."

At this stage, Weiss says later, a hearing parent would probably try a hearing aid, in the hope that with it, that right ear could hear something. Anything. A word, here and there. A loud vowel. Maybe just enough residual sound to help him lip-read. Maybe just enough to tell him when to turn his head to watch someone's lips. Hearing parents would do anything -- anything -- to nudge a child into the hearing world. Anything -- anything -- to make that child like them.

For a similar reason, Sharon and Candy make the opposite choice. If he wants a hearing aid later, they'll let him have a hearing aid later. They won't put one on him now. After all, they point out, Sharon's hearing loss as a child occurred at below 40 decibels, which meant that under certain conditions she could make out voices, unaided. Gauvin's, already, is far more severe than hers. Bundling Gauvin up against the cold, they make their way down the corridor, and into the car, and home, where they will tell Jehanne, and Jan, and friends, and family, a sizable group, really, that wants to know. He is not as profoundly deaf as Jehanne, but he is quite deaf. Deaf enough.

Liza Mundy is a Magazine staff writer. She will be fielding questions

2 comments:

anna said...

Great work on your blog - it was very enlightening. You've got a lot of useful info on there about sperm bank so I've bookmarked your site so I don't lose it. I'm doing a lot of research on sperm bank exposed and have just started a new blog - I'd really appreciate your comments

amber said...

Found a lot of useful info on your site about speech therapy - thank you. Haven't finished reading it yet but have bookmarked it so I don't lose it. I've just started a speech therapy blog myself if you'd like to stop by