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.
<sniip> This is quite a long article
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