So I was three months pregnant before I knew I was pregnant. Just figured it was change of life. The clinic kept saying no, and it's really the same signs, menopause and pregnancy, you just feel that lousy. So when they told me I was pregnant I thought about abortion. I mean, maybe I figured I was too old for this. But in my neighborhood, a lot of Caribbean women have babies; a lot of them are late babies. So I got used to it. But the clinic doctor was freaked out. He sent me for genetic counseling. Counseling? I thought counseling meant giving reassurance, helping someone accept and find their way. Wisdom, help, guidance, you know what I mean. This lady was a smart lady, but right away she started pulling out pictures of mongoloids. So I got huffy: "I didn't come here to look at pictures of mongoloids," I says to her. So she got huffy and told me it was about mongoloids, this counseling. So we got more and more huffy between us, and finally I left. Wasn't going to sit and listen to that stuff. By the time I got myself to the appointment [for the test], I'd been to see my healing woman, who calmed me down, gave me the reassurance I needed. I knew everything was gonna be ok. Oh, I wouldn't have had an abortion that late in the game. Maybe if it had been earlier. But not so late. I just got helped out by the healer woman, so I could wait out the results of that test without too much fussing. (Naiumah Foster, 43, African-American educator)
NAIUMAH FOSTER'S ALTERNATIVE counseling resources are not available to everyone confronting the anxiety that prenatal testing provokes. Some women find solace in talking with friends, family members, or religious leaders; others prefer to keep their feelings about the test to themselves. While a few women told me they were able to put the test out of their minds while waiting for results, the majority experienced this liminal period as fraught with concern.21 Most of the women who ageed to speak with me during that long waiting period said that talking about the test made them feel better; a few reported feeling worse.
In this chapter, I try to parse the structure of the anxiety which the pregnant women I interviewed in their homes, and occasionally, their offices, reported while waiting for test results. While some of the anxious images and emotions we conversationally explored are surely linked to a widespread sense of liminality accompanying pregnancy as a time-framed, embodied passage replete with unknown dangers and possibilities, it is my contention that this older, perhaps universal response has now been given a technological boost and form. Highly educated users of amniocentesis are likely to report dissatisfaction with the gap between the possibilities of what they imagine to be the benefits of thorough biomedical surveillance and control of fetal health and the actual limited nature of amniocentesis results; those with fewer scientific aspirations are more satisfied with the possibilities of testing, but no less anxious about its outcome. And women from diverse class, ethnic-racial, and religious backgrounds all responded to the technological shaping of the fetus into a baby which was depicted by the interpretations of sonograms that accompany the test. Yet even as most women expressed deep pleasure at having "met" their babies on the sonogram screen, they also described layers of anxiety. For if sonographers can describe the ultrasound monitor's images in language that enables pregnant women to project fully imaginable babies, this encounter also underlines the dire consequences of potentially receiving a "bad" or positive diagnosis. The liminal period awaiting test results intersects anxiety on many levels.
Of course, the early medical and psychosocial literature on patient responses to amniocentesis picked up this test-provoked anxiety as the central theme of evaluation (Lipkin and Rowley 1974; Lippman-Hand and Fraser 1979a, 1979b; Lubs and de la Cruz 1977), and all the counselors I interviewed recognized the increased level of anxiety engendered by the test. As pregnant women said after counseling and test taking,
I do feel more informed. But it's like learning to drive, and getting scared of car crashes. You know you could have one, you really do. For a while it's too scary to drive. But you just have to do it, to turn the key and drive the car again. (Lacey Smythe, 38, African-American secretary)
The chances of miscarrying are not so big, as I understand them. But I'm 40, and throwing all those negatives on a person, it can be scary. (Merced Rodriguez, 40, Colombian homemaker)
I felt very bad after I had the test. I went to bed, I was so scared. But then the next day, I tried not to think about it. But sometimes, when I look down there, I see the spot where they put the needle, I see where it was. Otherwise, I try not to think about it. (MariCarmen Trujillo, 38, Honduran UPS parcel handler)
Some anxiety is materially grounded as well as existential: Women may perceive their jobs as threatening to their fetuses, as did a Puerto Rican hair colorist who had observed two miscarriages and the birth of a child with cerebral palsy among her beautician colleagues. As a matter of practical epidemiology, she came for genetic counseling in order to ask if the dyes and fumes with which she works might affect her pregnancy. "It sticks in your mind, those girls I work with. It makes you wonder." Less specific but no less burdensome is the time frame that work imposes on prenatal health care. One of the suggestions that counselors make is that women who have had an amniocentesis take the rest of the day off and avoid physical stress for a day or two, as most test-induced miscarriages happen within the first twenty-four to forty-eight hours. Inevitably, some women question that recommendation. While the cry, "But I can't afford to take the rest of the day off" may come from a busy lawyer, I also heard it from child-care workers, secretaries, and home health attendants. There are practical concerns at stake in undergoing the test.
But much of the dread that accompanies the test is existential, focusing on fear of causing a miscarriage, fear of learning bad news, and, perhaps, fear of having unbalanced the forces of nature which are presumed to be protecting a pregnancy. Such anxiety deserves a closer reading, for it is potentially composed of several layers. Most obviously, pregnancy is, by definition, a liminal state. In it, each individual woman slowly intertwines her own life with that of a simultaneously material, imagined, and growing other. Then, through a life-changing, physically and emotionally transformative labor process, the conjoined become two. This species-wide process of multiplication and transformation connects us all to natural life, providing a universal grounding on which historically specific symbolic, discursive, and practical activities are staged. Worldwide, the process of reproduction may be envisioned in many ways: as mimesis, a kind of "photocopier" of parental or other kinship material; as the unfolding of a spirit or soul destined to fulfill a cyclical mission; as an acorn, embryologically poised to unfurl into an oak; as a miniaturization of prior adult persons and their social relations or in some other fashion (Ginsburg and Rapp 1995; Jordanova, 1995;
Strathern 1992). The interpretation of pregnancy has inspired responses in contexts as seemingly distant as Australian Aboriginal tribal ritual, Catholic art, and the development of Western reproductive medicine. Such institutionalized responses are highly gendered: whether one sees Australian ritual as "womb envy" (cf. Bettelheim 1954), envisions Mary's virgin birth of Jesus as "unique of all her sex" (Delaney 1986; Warner 1976), or pictures perinatology as a "male takeover of female creativity" (Corea, Duelli-Klein et al. 1987), pregnancy is clearly located on a terrain which is irreducibly female, but the need to control its outcome, thus ensuring members for a collective future, often fuels the activities of male specialists. The sexually embodied nature of pregnancy evokes a range of strong, and strongly culturally coded emotions, ranging from fear, awe, and dread, to hope, confidence, and attachment. Its anxiety is probably universal, as birth and death, maternal pain and accomplishment, and the many interests all societies hold in the recruitment of the next generation are inscribed in the rituals which pregnant women must follow.
Amniocentesis feeds upon this older, more universal state of liminal pregnancy anxiety, for it speaks directly to the personal and social aspirations embodied in producing normatively acceptable babies. The current generation of pregnant women is the first to be given an epidemiology of trepidation, and taught to live by the numbers. In place of "old wives' tales" and traditional wisdom, they have been given risk analysis. But its statistical powers provide only generalized descriptions for the specific concerns of individual women:
You know, I kept thinking after the genetic counseling, the amniocentesis, they just keep upping the ante on you, they really do. Now, I'm not even allowed to pet my cat, or have a glass of wine after a hard day's work. I'm supposed to think that three cigarettes a day is what caused my first miscarriage. They can see a lot of patterns, but they sure can't explain them. But they talk as if they could explain them. I mean, they want you to have a baby by the statistics, not by your own lifestyle. (Laura Forman, 35, white theater producer)
Feminists have strongly criticized the "iatrogenic (medically generated) anxiety" which contemporary obstetrics in general, and amniocentesis in particular, produce (e.g., Hubbard 1990; Rothman 1986, 1989). As many historians, sociologists, and other observers of modern obstetrics have argued, the controlling preoccupations of prenatal and obstetrical health regimes turn pregnancy into a diseased state, sapping women's confidence in their own bodies' ability to produce healthy babies naturally. In that process, medical services, overwhelmingly controlled and practiced by male doctors, become indispensable (Davis-Floyd and Sargent 1997; Ehrenreich and English 1978; Kobrin 1966; Rothman 1982; Wertz and Wertz 1977). Yet as other feminist researchers have pointed out, the powerful critique of the medicalization of pregnancy should not obscure its potential to alleviate the material dangers and consequences that childbearing holds for some women: Historically, maternal suffering and death figured large in female consciousness (Leavitt 1986), and maternal and infant morbidity and mortality continue to plague poor communities, where improvements in both the quantity and quality of prenatal care could and should prevent needless affliction (Christmas n.d.; Kochanek et al. 1994; Queen 1994). Thus many women may experience the constraints of medical control, while others are still struggling to enjoy medicine's benefits. Both stories are "true" and embedded in the increasingly nuanced critique of the medicalization of pregnancy which feminist scholarship provides. Indeed, the same class of women who spawned the activism and scholarship that criticizes the social control of pregnancy are both the beneficiaries of its positive impact on maternal-newborn health outcomes and its controlling constraints. Additionally, many women reject this critique of medicalization, for they share American medicine's technocratic vision of controlling nature through cultural, mechanical intervention. Using technology to subdue natural processes in pregnancy fits well with their cultural worldview in general. For them, obstetrical interventions offer order and reassurance at the symbolic level despite the many practical, cogent criticisms leveled by feminists and other health activists (Davis-Floyd 1992). Thus, the anxiety surrounding amniocentesis expressed in the interviews I conducted mirrors a tensionfraught terrain: The acknowledgment of pregnancy's creative as well as frightening aspects, the desire to benefit from technological control as well as to reject it in favor of trusting natural processes, and the discomfort of making personal meaning out of statistics are all expressed in the concerns of pregnant women struggling to find reassurance through a medically monitored, culturally liminal, and contested state.
A tension between the limited and specific nature of what an amniocentesis may reveal, and the more existential nature of pregnancy anxiety was the subject of many women's (and, occasionally, men's) evaluations of the counseling process itself. The literature on the evaluation of genetic counseling sessions suggests that counselors are usually quite satisfied with their communication with patients, but that patients have a far more varied response. In close to 50 percent of counselor-client interactions surveyed in one large study, neither side understood what the other wanted to discuss. In this study, more educated clients and those from higher socioeconomic groups fared better at communicating their questions and getting what they considered to be adequate responses (Kessler 1989; Wertz and Sorenson 1986; Wertz, Sorenson et al. 1986). My own data suggest a somewhat different shape to communicative evaluation on the part of patients: On the whole, and with significant exceptions, working-class and lower-middle-class clients appreciated their counseling sessions very much, finding the information to be very impressive, and the description of the test to be accurate:
I think that's as close as they can get besides actually sticking you with one of those needles because they let you know what you're in for, what's actually going to happen. (Sandra McAlister, 41, African-American administrative secretary)
She was very professional, she explained everything really well, we both understood this low MS AFP business by the time she got through. (John Freeman, 32, African-American computer technologist)
People from higher income brackets, especially if they were professionals, often considered the counseling unimpressive or insufficient:
I found it to be mildly disorganized. I mean, those aren't great statistics. She didn't tell us how long ago was the sample, was it in New York hospitals or all over the country? Has the study been repeated.. How can you say it's an accurate study if it hasn't been repeatedly updated? You're required to sign consent forms right, left, and center, but that's for the protection of the hospital, not for your own information.. They're practicing defensive medicine. And they really don't give you as much information as they might. The questioning about our specific backgrounds should be vital, and I found it perfunctory. I would have preferred to answer a questionnaire by mail, in advance. Then we could pinpoint the exact problems requiring testing. (Emily Pratt, 39, white lawyer)
Three themes of discontent are expressed in this evaluation, and all appeared frequently in professionals' responses. The first is the interrogation of the accuracy or efficacy of the numbers; the second is the criticism that genetic counseling is a protection device for the hospitals, not for the clients; and the third is that the specific circumstances of the pregnant woman (or, in this cohort, couple) have not been adequately taken into account. Over the course of several years of interviewing, I came to think that these three themes reflected class position and experiences, a point worth illustration.
"Fighting with numbers" is a strategy that frequently characterizes upper-middle-class client interactions, especially male interactions, with genetic counselors. A hospital-based psychologist, for example, challenged the counselor's expertise by asking about the patient population from which the Down syndrome epidemiology was drawn, asserting that his genealogy was full of older women having babies who would never have participated in such a study When the counselor courteously corrected his notion of population sampling, he became quite aggressive and asked about the medical significance of diet as a contribution to birth defects. A biostatistician insisted that he and his pregnant wife had come to counseling for a decision-making tree, as he already had access to all relevant information concerning the incidence and distribution of birth defects statistics; he had no time for the counselor's rendition. Watching such interactions, it was hard not to make two judgments: first, that male professional expertise sits uncomfortably in a room with less-credentialed but more specialized female professionalism; and second, that male anxiety is commonly and acceptably expressed through rationalized hostility. The etiquette of counseling here permits behavior that would less likely be tolerated from those (like most women and/or minority men) who do not conventionally hold discursive authority. Professional women, too, can participate in the numbers game, but I have rarely heard them express overt hostility. When she heard about my research at a conference, for example, a white economist told me her own amniocentesis story. Pregnant with a third child at 38, she read extensively in the medical literature, and discovered that the birthrate of live born children with Down syndrome was 25 percent lower than the figures quoted for the prenatal detection of this condition. She reasoned that the test was less accurate (that is, that it produced 25 percent false positives) than what the geneticists were claiming, and rejected it on that basis. The difference between the two rates (at midtrimester, via amniocentesis; at birth, among newborns) is based on another "fact" which the economist failed to turn up in her reading: Chromosomally atypical fetuses remain vulnerable to miscarriage and stillbirth throughout the pregnancy; late spontaneous abortions and perinatal deaths of Down syndrome fetuses account for the difference in rates (Hook 1978). Her "informed consent"
to reject the test was based on the upper-middle-class, highly educated strategy of "fighting with numbers." She was testing whether the discourse of genetics actually included a response to her own particular questions, based on a sophisticated but quite idiosyncratic statistical interpretation. Many professionals feel comfortable deploying the discourse of statistics, using this strategy to accept or reject the counselor's expertise.
Indeed, numbers loom large for professionals: Louise and Mark Peoples, a public school consultant and a college professor, were dismayed and discouraged to learn that their risk of carrying a fetus with Down syndrome had significantly increased in the four years since their first son's birth. They questioned the rapidity with which the incidence had gone up. Micki and Steve Schwartz, a real estate agent and a lawyer, felt bruised by the "callous way" in which such important numbers were offered:
She gave us all these numbers and they were just scary and depersonalized. She never stopped to consider how we might feel hearing them. They ought to send you the numbers in the mail, so you could read it in advance, and get down to business, reacting, when you meet face to face.
Like Emily Pratt and Micki and Steve Schwartz, many professionals "want it both ways": They question the importance or the accuracy of the statistics when applied to their unique cases, while bemoaning what they perceive as counselors' insensitivity to the impact such frigid facts will have. This sense of entitlement to the best scientific data, personal, even existential, attention, and entitlement to control also strikes me as a class-based response to anxiety.
Many from this strata also considered the counseling session, especially the informed consent forms which they were asked to sign, as a protection racket:
The genetic counseling was a drag. She gave me enough ifs, ands, and buts so that I would sign the consent form. Then I couldn't sue the pants off the hospital if something happened. I could have done without that. (Rita Newbury, 35, white real estate agent)
Many also indicated a dissatisfaction with the lack of individual, tailormade testing, "as if" a more thorough interaction with the counselor would reveal additional tests that should be undergone:
I think different people want different amounts of information. We got foggy-headed with her generalizations, we really wanted to talk about our own pedigrees. (Laura Forman, 35, white theater producer) No one walks around saying the numbers thing, like thirty-three out of one thousand have a miscarriage. They immediately say, "Which thirty-three? Is it me?" Hasn't she ever talked to thoughtful, educated women? Doesn't she know what our real concerns are? (Alicia Williams, 36, African-American public relations executive)
The generalizing nature of statistics, on the one hand, and the limitations of the capabilities of the test, on the other, left dissatisfied professionals in an existential dilemma. They could evaluate the limits of counseling information, but they could neither escape its indeterminacy nor acquire a more uniquely personalized reading of fetal health. Hamstrung, some reacted with anxiety or contemptuous dismissal. Perhaps this reaction is based in part on having experienced a relatively great amount of control over their life circumstances prior to choosing a late pregnancy. If my interpretation is correct, then, once again, the focus on control and the assumption that specialized services can enable greater control may also be linked to the middle-class, educated histories and worldviews including secularism, within which many late first pregnancies fit.
A few middle-class women who were (or were about to become) single mothers also told me they were uncomfortable at the counseling session because counselors request detailed information on paternal as well as maternal contributions to the pregnancy. Having chosen to carry a pregnancy without male social contributions, they saw little reason for evaluating male contributions to medical history:
The nurses asked me a lot of intrusive questions about the father, questions I couldn't even answer. I was kind of adamant that I didn't want to discuss it. (Carol Seeger, 42, white museum curator)
The counselor wanted to know why artificial insemination, and I was floored, I didn't know what to tell her. Finally, I just said, "Because I'm a single woman." I didn't know why she needed to know. (Enid Zimmerman, 41, white municipal service planner)
Both of the "out" lesbians whom I interviewed also reacted against the request for paternal medical information, but my sample is obviously too small to draw any interpretations. Its size may have less to do with the actual number of lesbian women using amniocentesis than with the decision not to reveal their sexual orientation in a bureaucratic, fragmented institution from which they must constantly seek services.
The risk of hostility, derision, or other prejudicial reaction may condition a decision surrounding sexual and/or other reproductive information.
Nonetheless, counselors are persistent in seeking paternal health information. Their testing recommendations are, of course, based on information about both genetic contributors: A family history of mental retardation or spina bifida is as likely to run on the male as the female side. The responses of some middle-class single mothers and two self-identified lesbians thus reproduced the cultural assumption that women are solely responsible for the health of their fetuses, even as they contested the heterosexually coupled assumptions which ran through the intake interview. Clearly, they were also commenting on an ethos or norm of counseling: "When I got to the appointment, it was all for couples, like, for the fathers to be there: no room in that room for a single mother like me. Just imagine" (Naiumah Foster, 43, African-American educator).
Poor, working-class, and lower-middle-class single mothers were less likely to comment on normative coupledom as an aspect of counseling, and many counselors were skilled at making them feel comfortable, especially if their patient population often arrived without partners. Many single mothers from less privileged backgrounds simply told the counselor, "I don't know anything about his family" or "I can't tell you all that stuff," dismissing the counselors' probes for paternal health histories. But they rarely questioned why the information was needed. Professionals, once again, felt more empowered to question the framework within which their medical interactions were structured. "I've become more and more open to Western medicine, I basically think it's a good thing. Of course, you've got to stay in control, learn all about it, know your rights and needs" (Enid Zimmerman, 41, white municipal service planner).
Pregnant women and their supporters from less privileged backgrounds also expressed some dissatisfaction with the counseling process, but their reasons were quite different.
You want to know my viewpoint? I was overwhelmed by that terminology. You could be more graphic, so people could understand. If you want to explain things, just make for example one circle with two lines, then you can say more. There were too many words, too many pictures, I couldn't follow it all. [Asked if understanding would have been easier if the presentation had been in Spanish, he responded:] It's the same thing: In English or in Spanish, it's too dense. (Hubierto Lopez, 38, municipal worker)
How could I follow all that? She did her best, but it was a lot to follow. (Iris Hidalgo, 38, Puerto Rican homemaker)
I knew about mongolism. The rest of that stuff, I didn't quite get it, but I got the basic point. Otherwise, she would have had to slow way down and I could see she was busy. Too busy to explain it more. (Michelle Jeffers, 35, African-American nursing home attendant)
In each of the counseling sessions cited above, I had observed clients being unfailingly polite, and insisting that they understood the counselor's message when she asked for feedback. Yet in their home evaluations, there is ample display of the gaps across which counseling information did not reach. In thinking about why counselors don't always know whether their message is being received, I believe that at least two forces are at play. One is that even counseling materials developed for clients with low scientific literacy may often miss their mark; the other is that many clients from lower-working-class or working-poor backgrounds blame themselves rather than professional explanations when they do not understand something in a medical interaction. In other words, there is ample space for both improving the content of information, and increasing awareness of the role which classstructured etiquette plays. When some clients from working-poor and working-class backgrounds politely told the counselor they understood the information she offered at the hospital, but later told me that they did not, I was struck by the complexity of the problem of scientific literacy in a highly stratified society. Those on the top end of the scientific literacy scale often expressed dissatisfaction with the counseling process. Knowing more before they entered the counseling room made them less appreciative of the resources that counselors offered. Those from less privileged backgrounds expressed deep appreciation of the counselor's knowledge, but were sometimes unable to understand or use it. There is an obvious gap between the vast and rapidly proliferating font of information that genetics research is producing and counselors are shaping, and the communicative aspirations and frameworks that pregnant women and their supporters from diverse backgrounds bring to their interactions.
Of course, scientific literacy is forged in daily life, and not just in formal education or medical interactions. Because I wanted to learn about how women incorporated a new reproductive technology into their lives, and not only into their medical histories, one of my questions was how they first learned about amniocentesis. Their answers revealed that discourses of prenatal testing, genetics, and disability have permeated into sediments of public knowledge throughout the social spectrum. Many told me they had friends who had already used the test:
I'm a big talker, I learn from all my friends. Nobody said, "Don't do it." (Diana Mendosa, 35, Puerto Rican nurse)
My two sisters, they had it. Nothing bad happened. (Merced Rodriguez, 41, Colombian homemaker)
Virtually all middle-class women knew about the test from a dense and overlapping nexus of friends, medical professionals, and books. Working-class women more likely learned about the test from friends. But they and working-poor patients were also the only ones for whom a counseling session might be the first time they had heard of amniocentesis.
Sometimes, those without prior knowledge had to evaluate professional versus peer conversation: "At the clinic, everyone was talking about it, they say, 'Don't do it, my sister did it, they put the needle in the baby's head, it came out dead.' But I figured the nurse, she told me right" (Mari-Carmen Trujillo, 38, Honduran UPS package handler).
Networks of information (and sometimes, misinformation) abound throughout daily life. Many women in all social strata learned about both childhood disability and prenatal testing from mainstream magazines: Glamour, Self, Savvy, McCalls, New York Magazine, the New York Times Sunday Magazine, Parents, and Good Housekeeping all carried stories related to this technology during the years in which I was interviewing. Three times during the course of my research I found myself implicated when women I met said they had read about amniocentesis in articles in New York Magazine, Discover, and Self where my own research was quoted. During this period, activists from the Down Syndrome Parent Support Group in which I was an observer appeared on the Donahue show; I registered dramatic increases in the knowledge and the number of questions clinic patients raised at counseling sessions after that appearance. Middle-class women, especially profes sionals, were often unable to recall when and where they had first learned about amniocentesis; it was imbricated into their general fund of social knowledge. Well-educated women often arrived at counseling sessions with new questions on Wednesdays after the Tuesday science section of the New York Times reported on advances in genetic technologies. But women without privileged educational backgrounds were likely to remember and to mention specific media sources when I asked about their first encounters with this technology. Some learned from TV shows like Jerry's Kids (a telethon whose paternalistic attitudes make many disability rights activists livid), and from talk radio programs. Others found out about testing from soap operas and docudramas. During the late 1980s, Dallas, a melodrama of family wealth, sex, and intrigue, unfurled an amniocentesis story in three episodes, while the medical serial drama St. Elsewhere featured an abortion after a prenatal diagnosis of Down's. Increasingly, these and related issues end up in the science coverage of nightly news programs. And many science specials on Public Broadcasting Service and other channels featured programs on Down's and other relatively common disabilities, genetics, or new reproductive technologies:
Besides, I saw this special on TV, it was a good special, about adults, they had Down syndrome, and they were institutionalized for many years. Then they were released, and two of them fell in love and got married. It was a very heart-touching drama. (Diana Mendosa, 35, Puerto Rican nurse)
In 1989, ABC showcased Life Goes On, a family series featuring a teenager with Down syndrome, which ran through the early '90s. Chris Burke, who played Corky, has also written a successful "as told to" autobiography (Burke and McDaniel 1991). The series provoked an enormous controversy in the genetics community: Many counselors and clinicians felt that his presence as a"high-functioning" Down's adolescent painted an overly romantic portrait of life with a disabled family member. But parent activists of children with Down syndrome greatly appreciated the show, for it normalized images of their daily lives and presented an optimistic portrait of their imagined futures. Chris Burke himself has made many activist appearances at events related to disability integration, and stands as an icon not only of normalization, but of economic success and social celebrity.
Pregnant women without privileged educational backgrounds sometimes also learned about amniocentesis through their workplaces. Bertita Coron, a Honduran building cleaner, listened to men discussing their wives' amnio centeses at the barber shop where she regularly swept up. When her clinic nurse suggested an appointment with a genetic counselor, she felt prepared. A child-care worker from St. Vincent came for amniocentesis at the urging of her employer, who had recently had a baby at the age of 38. She appreciated the suggestion.
The overwhelming majority of the eighty women I interviewed (95 percent) were satisfied that they had used the test. Despite the anxiety it provoked, almost all reported that it was better to know than not to know.
Even those reporting pain, or the side effects of cramping or exhaustion, were glad they had chosen to be tested:
I'm a real coward for pain, I was scared to do this. And the cramping was bad, way worse than I anticipated, and I wondered a lot—we both wondered a lot—if it hurt the baby. She was moving around so much on the sonogram afterwards, we were scared we hurt her. But I seem to think not. I think she's ok. And soon we're going to know that she's really ok, and when that time comes, well, I'll be jumping for joy. That's what's so great about this test. (Carole Freeman, 33, African-American sales clerk)
I cried at the test. The doctor, he said, "She came alone, that's why she's crying." But that's not why I'm crying. I'm crying because it's hard to think about these things. So I went to church for one hour, and then I felt better. This is an important test. We got a lot of women's problems, social problems, health problems, and this is an important test. (Merced Rodriguez, 40, Colombian homemaker)
But a few reported criticisms. The first set of criticisms had to do with social relations in the medical suite:
The two girls [radiology technicians] and the first doctor [radiologist], they were nice. But this one man there, he was a Jewish man who don't say anything. I don't know who is touching my belly, pushing my belly. He puts something like a ruler on my stomach, he doesn't talk to me. He's punching, pushing, but he don't say anything to me. (Elena Lopez, 36, Peruvian homemaker)
He was cool, too cool, like, aloof. Like as soon as he finished with me, he didn't say anything to me, just pulled out the New York Times and sat down and started reading. I expected him to talk to me, but he never asked me one single question, not even my name. He just measured and poked me with his needles. (Angela Carponi, 33, white homemaker)
In these cases, basic courtesy or better "bedside manner" might well have augmented a woman's satisfaction with the test. But the second set of negative evaluations were more existential, indexing the burdens of "choice":
If something turns out to be wrong, maybe I'll be happy I've had it. But in some ways, I wish it wasn't available, I wish I didn't have to know.. I've had a couple of abortions before, so it isn't that. But there's something about this that's like playing God. (Nancy Smithers, 36, white lawyer)
I had to do this because of my husband, because of the drugs. But I don't think I'd recommend it to my girlfriends. No, I wouldn't tell them to have it unless they had to have it. I don't think a person should know all this stuff. (Sandra McAlister, 41, African-American administrative secretary)
This thing was stuck exactly where my baby is supposed to be the most protected. It was more intrusive that I ever imagined, having it there. I'm a tough old bird, and he [the doctor] just couldn't get that needle in. He kept trying and trying, and it went on a very long time, and all that time, I kept thinking, "This isn't right." My womb is a sheltered place, a protected place, the one place my baby should be safe and undisturbed. Yet here was this doctor with this thing, this needle, shattering it. I guess what was shattered was my image of my own womb. But it hasn't come back together again. (Carola Mirsky, 39, white schoolteacher)
In such comments we may detect the personal costs of extending medical control: A growing knowledge of maternal-fetal separation is implied in the use of prenatal diagnostic technology. The price of such knowledge of separation may include the transformation of maternal responsibilities from those of caretaker to those of quality control. Before the existence of such tests, pregnant women kept or ended pregnancies based on their life circumstances, but rarely on the anticipated quality of fetal life. But "information" is never neutral; in this case, it is bought at the expense of the pregnant woman's ability to accept her fetus "as is," rather than to achieve a psychomedical distance from its growing presence in order to judge its quality.
But whether they were satisfied or dissatisfied with the counseling and the test itself, virtually everyone reported anxiety during the several weeks' waiting period before receiving results. Above all else, a close encounter with pre-natal testing increases women's worries about the specific health status of the fetuses they carry. Generic pregnancy fears might once have crystallized around the desire to carry a "healthy" baby. For women having amniocentesis, there is now a focus on specific conditions: chromosomes and alphafetoprotein levels index a panoply of anxieties with newly medicalized names. The specificity and reality of childhood disability become exquisitely focused through prenatal testing, engaging a complex mix of science and superstition as pregnant women and their supporters encounter potential diagnoses:
Down syndrome, I knew about Down syndrome. What I didn't know about was all that other stuff. There's more to worry about than just Down syndrome, now I know there's other heredity problems. And this spine business [spina bifida], I wasn't exactly acquainted with that. Something more to worry about. (Lacey Smythe, 38, African-American secretary)
I remember thinking, "Oh, my God, it's like a message direct from inside." In the old days, our mothers certainly never knew this, the picture of the inside of their wombs, the small swimming thing. But we do. We're the first ones to follow pregnancy in books, day by day, with photos. We know exactly when the arms bud off, when the little eyes sew shut. And if something goes wrong, we know when that happens, too. (Pat Gordon, 37, white college professor)
They called it "an error in cell division." It feels like the cells could have a car crash, and produce this wreckage, and that's the extra chromosome, that's Down's. (Pat Gordon, 37, white college professor)
Suddenly, I'm starting to see all these kids with Down syndrome on the street. Who knows if they're really Down's kids, or if I'm imagining it. And now you're asking all these questions, and I'm trying not to think about spina bifida. I never even knew spina bifida was a problem. But after counseling, I do. (Enid Zimmerman, 41, white municipal service planner)
The power of the sonographic imaging which accompanies the test also has complex effects, funneling the pregnant woman's consciousness of her fetus into highly focused and routinized channels (Mitchell 1993; Oakley 1993; Petchesky 1987). But how are these channels constructed through imaging? The gray-and-white blobs of imagery it provides must be interpreted; they do not speak for themselves. As many sociologists and historians of science and technology have pointed out, the objects of scientific and medical scrutiny must be rendered, they are rarely perceived or manipulated in their "natural" state. It is their marking, scaling, and fixity as measurable, graphable images that enable them to be used for diagnosis, experimentation, or intervention (Fyfe and Law 1988; Lynch 1985; Lynch and Woolgar 1990). The power of scientific images may, in large measure, be attributed to their mobile status: They condense and represent an argument about causality which can be moved around and deployed to normalize individual cases and theoretical points of view (Latour 1986, 1990). Viewed on a television screen or snapped with Polaroid-like cameras, sonograms may appear to pregnant women and their supporters as "babies." But the particularity of the object they view is deeply embedded in the practices of its scientific representation:
The partial rotation of the beam and the electronic recording of the echoes as spots of light thus "renders" .the internal two-dimensional structure of an organ or a limb or a test object in a given plane. The resulting image is certainly not artifactual. It registers features, like the fat-muscle interface, that really exit. Yet it picks out only those features that reflect ultrasound. (Yoxen 1989, 292)
But surely, neither pregnant women and their supporters nor members of the right-to-life movement are thinking about the embedded, reductive, and normalizing aspects of imaging technology as they "meet" a baby on a television monitor for the first time. Such uterine "baby pictures" are resources for intense parental speculation and pleasure, for they make the pregnancy "real" from the inside, weeks before kicks and bulges protrude into the outside world. The real-time fetus is a social fetus, available for public viewing and commentary at a much earlier stage than the moment of quickening, which used to mark its entry into the world beyond the mother's belly. Perhaps sonograms also enable fathers and mothers to "share" what was formerly an entirely female experience of early pregnancy, increasing and hastening men's kinship claims (Taylor 1993).22 And surely, they increase the velocity of the recognition of fetal development as a process independent of the mother's embodied consciousness. As one white college teacher commented to me, "It put my pregnancy into fast-forward." She thus neatly aligned sonography with videotapes, that other near-ubiquitous forum for home viewing. One couple who disparagingly referred to themselves as "yuppies" brought their own video camera and tape recorder to the sonogram examination, for they wanted their own tape of the fetal heartbeat. The acceleration of a subjective connection to the pregnancy thus passes through, and is augmented by, a piece of technology external to the pregnant woman herself.
Of course, modern imaging technologies provide powerful framings for the health and meaning of a pregnancy which appear radically new and individualistic; but they do not hold exclusive rights to the air space in which the image of pregnancy is interpreted. Public commentary on pregnancy has ebbed and flowed with the development of religious discourse, the representational arts, and the history of science and medicine. Current biomedical interpretations pass through other "images that possessed power within their own time and to which other images and ideas clung" (Stafford 1991, xvii). In the process, pregnancy is constantly relocated as an object of speculation, investigation, and intervention.
While contemporary feminists have alerted us to a changing relationship among a pregnant woman, her fetus, and the social world indexed in reproductive medicine, they have also provided ample evidence for older representational politics. Sonograms reinscribe prior debates and interpretations about the meaning of pregnancy which have deep roots in Western history: Residues of those discourses shape what we take to be modern notions of sex and its biological embodiment. As I tried to indicate in chapter 4, the idea that women are responsible for the health of their fetuses but that men generate life itself has a long history in Western theology, the representational arts, natural history, and emergent biomedicine. Thus, public images of pregnancy are not new; but in earlier times, fetuses made their presence public slowly, over a period of months. A woman's physical and emotional state might reveal internal signs of pregnancy in hormonally induced swollen breasts, skin changes, energy loss, dizziness, or nausea, all of which were experienced kinesically and holistically. A midwife or physician might later pick up a fetal heartbeat through a wooden trumpet, stethoscope, or, more recently, a Doppler machine. But the passage from internal to external signs was slow, and almost all of the cues depended on the pregnant woman's reportage.
Now, sonography bypasses women's multifaceted embodiment and consciousness, providing knowledge of the fetus independent of her own framework (Oakley 1984; Petchesky 1987). Moreover, that framework reduces the range of relevant clues for whose interpretation women act as gatekeepers. A technology of exclusively visual signs which renders "a collection of echoes" into a representation of a baby now substitutes for embodied states. This reduction also sharpens the focus from a diffuse knowledge of women's embodied experiences to a finely tuned image of the fetus as a separate entity or "patient." This visual representation can then be described by radiologists, obstetricians, and technologists in terms which grant it physical, moral, and subjective personhood (Mitchell 1993). Indeed, one ethnographic study of sonographers and their pregnant patients powerfully described the code switching that medical professionals perform. Among medical peers, they describe sonograms in the neutral language of science, but when speaking to pregnant women, sonographers attribute motives to fetal activity and presence. A fetus that is hard to visualize is "hiding" or "shy"; an active fetus is described as "swimming," "playing," or even "partying." "Showing the baby" drives its personification (Mitchell 1993, 1994). In this case, the routinization of a new reproductive technology (or, more properly, a technology whose routinization is most powerfully occurring in the prenatal context; sonograms are also used to visualize the human heart and abdominal masses, but I doubt that these uses are personified) provides medical professionals with a "toy" through which they can simultaneously provide a compelling service, and stake their claim to authority. The need to both monopolize a new professional turf, and popularize its value here contributes to radiologists' and technologists' perhaps subconscious desire to personify the fetus (cf. Brown 1986).
Perhaps the most powerful aspect of that personification process is the sexing of the fetus. The technology often (although not always) allows radiologists to visualize fetal sex organs at the midtrimester examination which precedes amniocentesis. And whether or not the radiologist "can tell," the chromosome analysis always reveals fetal sex. And, as Barbara Katz Rothman's study pointed out a decade ago, knowledge of fetal sex increases the velocity of a pregnancy: In our culture, a sexed fetus is no longer a developmental imaginary, it becomes a "little slugger in a Mets uniform or a ballerina in a pink tutu" (Rothman 1986). Lost in the rush to fetal sexing is the slower process by which even a newborn may remain relatively unsexed, or, at least, episodically sexed in the experiences of new parents.
Not everyone wants to know the sex of the fetus. Genetic counselors report that about half their clients would rather retain the mystery. But in my interviews with pregnant women, less than a quarter didn't want to know, and they were almost always those bearing a second or subsequent child. For first-time parents, knowing the sex is a powerful lure. And in my personal case, it was difficult for my obstetrician to keep his mouth shut once chromosomal information had been entered into my chart during a pregnancy in which I explicitly said I didn't want to know about fetal sex. Genetic counselors often caution those who would rather not know to announce their preferences firmly when they enter the radiology suite. Otherwise, a loquacious medical staffer is likely to point out the sex.
Some of the lure of sexing is based on control of knowledge. To the question "Why do/don't you want to know the sex of your fetus?" many people (and virtually every Jewish person in the sample!) answered,
"Because if the doctor (or technologist, or geneticist, or clinic secretary) knows, then I should know, too."
I didn't like the idea that someone knew something about my baby that I didn't know.. I don't care whether it's a boy or a girl, it really isn't that, it's merely that information exists, and other people have it. (Laura Forman, 35, white theater producer)
As long as it's known, I feel the parents should know, you know. I mean, we shouldn't be the last to know, it's that kind of a feeling. (Carola Mirsky, 39, white schoolteacher)
For such respondents, once technology exists to provide the information, ignoring it constitutes deprivation. Such a structure of sentiment surely drives the proliferation of knowledge generation and consumption. For some others, the need to know is cosmological:
Just like that, because it's a miracle of science to know what God provides for you, that's why I want to know. (Feliciana Bautista, 37, Dominican factory worker)
They tell me it's a boy. After three girls! I still don't believe it. I'll believe it when I see it. I heard from a neighbor they sometimes make mistakes. I'll believe it when I see it. But knowing, that's a gift. (Cynthia Baker, 40, African-American homemaker)
And for some, fetal sex knowledge genderizes in conventional ways:
Because if it's a girl, you got to be more careful with girls. You can't just let anyone take care of them. (Rafael Trujillo, 43, Puerto Rican unemployed worker)
I want a girl, but my name is dying. If it's a girl, well, we'll just have to plan for a second. (John Freeman, 32, African-American computer technologist)
Let's face it, knowing the sex made it go from a fetus to a child. I can't tell you how, but now I feel more protective, it's more real. And because it's a girl, I feel more connected to it, to my mother, to my sisters. Jeremy asked me which sister I want to name it for. I don't know if I want to do that yet. But the possibility made her more of a baby, a full kid, a living child. (Marise Blanc, 35, white college professor)
Genderizing is not only conventional; it may be practical, as well. Several women from working-class families claimed they wanted sex information for practical reasons. "I figured at this point, financially, instead of buying all those different kinds of clothes, you just buy one specific set," said Angela Carponi, a 33-year-old white homemaker.
During the course of my research, I was invited to a baby shower for a pregnant genetic counselor with whom I worked closely. Her colleagues (who had analyzed her fetal chromosomes) had purchased appropriately pink items, but she refused to take them home, saying, "It's gonna cause a war in my family. My mother wants a girl. His mother wants a boy. They'll both be happy at the birth. But if they find out now, they'll tear each other apart."
Occasionally, differences arise in a couple. Then, a decision to know or not to know must be negotiated: "I want to know, but Frank doesn't want to know.. He doesn't want some doc, you know, telling him before he has the real experience, finding it out together, in life, not as information," said Marcia Lang, white psychologist, 37.
Like amniocentesis itself, which feeds on age-old pregnancy anxieties, the curiosity and mystery of fetal sexing is now reified and revealed through technology. Old cultural preoccupations with genderizing "who the baby will be"are thus put through the sieve of new technologies of knowledge.
Life before Birth
Many women are delighted to claim this new knowledge as their own, aligning their descriptions to what technicians and physicians orchestrate:
It was wonderful. I said, "It's great, can I leave now?" I mean, I didn't want the amnio, I just wanted to see my baby. I saw the spine, the bladder, the orbs for the eyes, the penis, everything, I saw all of it, I loved it. That was very satisfying. Maybe they do it as bribery, so you won't jump off the table. I feel like there's not much discrepancy between the sonogram and what it feels like inside me. (Alicia Williams, 36, African-American public relations executive)
It's a creature from the moment of conception. On the TV screen, I saw it all, a little head, a beating heart, even fingers and a backbone. It looked like a baby but indistinct, blurry.. As it grows, it will get bigger, and more distinct, almost like tuning in the television. It corresponds to what's inside me now. (Juana Martes, 37, Dominican home-care attendant)
It looked very alien, like a little space creature. It was clasping and unclasping its hands, and it had its fist under its chin.. It was moving around, so I could see the arms and fingers, which was nice, then it kind of got up on its legs, kind of pushed itself up, and you could see the whole spinal column, and the heart and the eye sockets and the shape of its skull. It's like a halfway baby now, yes, it's a halfway baby, and it's an inside-out feeling. (Marge Steinberg, 39, white social worker)
Like the pregnant woman who used the video analogy, Marge Steinberg was drawing on the ubiquitous fetus-as-voyager imagery which moviegoers and television watchers recognize from films like 2001, A Space Odyssey and the right to life's Silent Scream, and, more recently, the Volvo advertisement selling safety to pregnant couples and their "passengers" (Taylor 1992). The ad presents an ultrasound fetal image accompanied by the message, "Is Something Inside Telling You to Buy a Volvo?" It was withdrawn after public protest at capitalizing on a sacred terrain. Sonographic fetal images perform practical and aesthetic service in the world at large, where women get to know them long before they arrive in the obstetrics suite.
Many women also recognize that their viewing is orchestrated, and that their internal state has been interpreted:
It was nothing, really, it looked like nothing. Then they showed it to me, and made it something. (Ileana Mendez, 37, Ecuador-born babysitter)
To tell you the truth, it didn't really look like a baby I couldn't really tell what it was, they had to tell me. (Letty Sharp, 36, white hospital clerk)
You could see at certain points. Towards the end, I couldn't really tell what was what, and then there was the feet. I saw the legs crossed, and then it looked like a little baby, cute. After they told me what to look for, then I knew I was really pregnant. (Sandra McAlister, 41, African-American administrative secretary)
The voyager image provided by sonograms is compelling, ubiquitous, and hard to escape. When I asked women what their internal image of the pregnancy currently was, few found words that differed from the stereotypes describing fetal space creatures: "Like 2001"; "Just like in A Child Is Born, you know, kind of pinkish-creamy"; "Floating," and "A little traveler inside me." Only a few women could imagine other descriptive referents, and they had luxuriant animals and vegetables blooming in their bellies:
I could just imagine it like a little fish, you know, the one that jumps a lot, like a sardine, no, not a sardine, it goes uphill.. A salmon, that's what I feel, this child goes so low sometimes it jumps like it's going to go through my vagina, that's how it jumps, all alive. (Angela Carponi, 33, white homemaker)
It's got lumps and bumps, and they're growing, organic, you know, sort of like a cauliflower. (Marcia Lang, 37, white psychologist)
But for most women, internal images of their pregnancies had been refocused through the lens of sonography, eclipsing any alternative, less standardized embodied notions of what a fetus felt like. Their internal states were now technologically redescribed.
Moreover, this technologically assisted viewing is often a source of anxi ety, as well as pleasure (Stewart 1986). If the fetus has become "real" through its imaging, as mysterious as an underwater documentary and as intimate as a videotape, it has also become vulnerable:
I saw the sonogram of the twins, and I was thrilled. But I really couldn't read it, I didn't know what it meant. They had to interpret it for you, to say, "Here's a heart, these are arms." Afterwards, it made me queasy—they made the babies real for me by telling me what was there. If they hadn't interpreted, it would have just been gray blobs, and now, I'm more frightened to get the results of the amnio back. (Daphne McCarle, 41, white college professor)
Because as soon as you see the sonogram, it's very real. They focused on the heart, and it was beating, and then you could see the head And the doctor was really terrific, like, there was all this excitement in the room, and she gave me a picture, and they're all very positive. but you're trying to contain yourself from feeling that way because you know the only reason you're having this test is because you're more likely than the average person to have a problem. So I walked out of there pretty high...but I really have been trying to hold back the feeling pending results. (Laura Forman, 35, white theater producer)
With sonography and amniocentesis, one can be "just a little pregnant." Laura Forman's comments on self-containment surely echo Rothman's analysis of the effects of having a Tentative Pregnancy (Rothman 1986). A woman's growing awareness of the fetus she is carrying is here reshaped by her need to maintain a distance from it "just in case" something wrong should be discovered, and she should be confronted with the necessity to choose to end or continue the pregnancy. Even as the sonogram personifies the fetus, the amniocentesis puts its situation in question. Simultaneously distanced and substantiated, the pregnancy is suspended in time and status, awaiting a medical judgment of quality control.
The intertwined technologies of sonography and amniocentesis underline the liminality of pregnancy, etching the burdens, as well as the benefits, of "choice" into the heart of the experience. Occasionally, viewing the sonogram enables male partners of pregnant women to articulate their own engendered anxieties:
It's definitely a woman's choice, but it's heavy. I think guys should be there for the sonogram and the amnio. It's all very heavy. You really see something moving, it makes it into a person for you. If something goes wrong, and she has to have an abortion, after that the guy should know what she's going through, take responsibility for that. (Steve Schwartz, 36, white lawyer)
After encountering his fetus on the screen, one father asked anxiously, "Where are all the other fathers? Why aren't they here to see this?" (John Freeman, 32, African-American computer technologist).
But most of the technological augmentation of anxiety is expressed by women, not only because pregnancies happen inside of women's bodies, but because most (perhaps all) cultural constituencies in contemporary America assign the benefits and burdens of making and raising babies to women:
So I went off to have the sonogram, and I had these two guys, lab technicians, I mean, we're all in a dark room, semidarkness, and they begin to refer to the fetus as "he," it's like there's a real ba I mean, they were joking, but I was traumatized. It became a real baby. I didn't realize what a sonogram really was, what they show you up on that screen. All of a sudden, the baby, the fetus turned its face toward me. And, Rayna, there was a real face. Almost twenty weeks of face. And the technician said, "See it," and I thought for a moment, "He's looking right at me." He looked like that image from 2001: I mean there was a person there, inside my body, looking out at me. It was too strange. And too traumatic to have an abortion after that. That's what the sonogram did. (Carol Seeger, 42, white museum curator)
I was hoping I'd never have to make this choice, to become responsible for choosing the kind of baby I'd get, the kind of baby we'd accept. But everyone, my doctors, my parents, my friends, everyone urged me to...have amniocentesis. Now, I guess I'm having a modern baby. And they all told me I'd feel more in control. But I guess I feel less in control. It's still my baby, but only if it's good enough to be our baby, if you see what I mean. (Nancy Smithers, 36, white lawyer)
To tell you the truth, I had a sonogram with my first one at eight weeks, and it changed my ideas about abortion. We all say it isn't a human being, but that's no longer true. This pregnancy, I waited for the sonogram till the amnio. At sixteen weeks when you see it, everything is there. The heart is beating, the fingers are separating, the spinal cord is closed. It's your decision, it's your body, and you must do whatever is right because you must raise whoever you have. But it's a human being. You can't have this test without thinking about it like this. (Amana Owasu, 35, Nigeria-born hospital attendant)
If women have become the keepers of technologically assisted fetal health, they have also become our moral philosophers of "the private." Fetal imagery is changing the ways in which women respond to the anxiety of grading, normalizing, and controlling pregnancy. And our national political discourse on childhood disability on the one hand, and abortion rights on the other, is in part filtered through women's diverse and dense experiences with these anxiety-provoking images.
The anxiety about which I have been writing is thus multilayered. As I have tried to indicate throughout this chapter, it feeds upon older, more existential fears engendered in the liminality of pregnancy, and it is given new salience and medicalization through technological intervention. It is at once individual and private, and also public and political. Above all, this anxiety invokes dread because it confronts the issue of "choice." A diagnosed fetus is potentially an aborted fetus. And the fear of taking the responsibility for ending a pregnancy that one has desired is substantial.
Late abortion is thus the hidden or overt interlocutor of all amniocentesis stories. This technology turns every user into a moral philosopher, as she engages her fears and fantasies of the limits of mothering a fetus with a disability. It is this disabled fetal imaginary which forms the subject of chapter 6.
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This guide Don't Panic has tips and additional information on what you should do when you are experiencing an anxiety or panic attack. With so much going on in the world today with taking care of your family, working full time, dealing with office politics and other things, you could experience a serious meltdown. All of these things could at one point cause you to stress out and snap.