Update, Re: Moos trying to intentionally create deaf child
Jessica A.
http://www.washingtonpost.com/wp-dyn/articles/A23194-2002Mar27.html
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.
By Liza Mundy
Sunday, March 31, 2002; Page W22
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.
Jessica A.
news:a8kndf$dqg$1...@usenet01.srv.cis.pitt.edu...
> "Jessica A." <nos...@yahoo.com> wrote in message
> news:uarn173...@corp.supernews.com...
> > 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.
>
> appears to be partly deaf]
>
> Geez, if these two are so hellbent on making sure their kid is deaf, why
> don't they just shove an icepick in the ear that is registering some
sound?
> Makes about as much sense as all the trouble they went through in the
first
> place.
>
> Statistical Outlier
> (thoroughly sickened)
Using an icepick would be legally recognized as child abuse. What they did
is not.
IleneB
If they had a hearing kid, he could certainly learn to sign and relate
to the deaf community, etc. It's certainly a community, but a very
limited one, born of necessity. Why on earth would these idiots choose
a limited life for their kid when he could be open to all?
I was involved for years in TV captioning for hearing-impaired people.
There was certainly the "activist community" members. But I can hardly
see it as a preference, especially when a hearing kid could sign, live
among the deaf community and deaf family, *and* have access to a much
larger world outside of Gallaudet College, residential schools and
little commmunities. Not to mention music.
I think what these selfish bitches did is ghastly. *Of course* it's a
negative thing to be born without one of your available senses, even if
a positive community is built up around that loss.
Ilene B
Critter
> http://www.washingtonpost.com/wp-dyn/articles/A23194-2002Mar27.html
>
> 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.
>
> By Liza Mundy
> Sunday, March 31, 2002; Page W22
>
> 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.
Breeders are always breeders:
MeMeMeMe...
Gallilea
writes:
>
>"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.
What a load of crap. Achondroplastic dwarfism is a dominant gene with classic
Mendelian inheritance. In contrast, deafness has MANY causes, not all of them
genetic. I have Meniere's Disease, and I'm deaf in one ear-- many people with
my disease have it in both ears, and wind up legally deaf. There is a wide
variety of other diseases and injuries that can cause deafness. I'm shocked
that someone with such strong connections in the deaf community would even
THINK there's a "deaf gene" and if they find it, they can eliminate deafness.
Gallilea