Sårbar, suveren og ansvarlig. Kvinners fortellinger om fosterdiagnostikk og selektiv abort.

Abstract

Vulnerable, sovereign and responsible. Women’s stories about prenatal diagnostics and selective abortion. “In Norway we make sure that some children with Downs’s syndrome are born, and that their mothers are younger than 38 years”. This statement illustrates an important consequence of the Norwegian politics on prenatal diagnosis and selective abortion. Women older than 37 have to decide whether they want to “know” or not (undergo prenatal diagnosis). Other women may experience the discovery of anomalies at ultrasound examinations. And after discovery, or test result, the women have to decide whether or not to have selective abortion. Women’s stories about their dilemmas, paradoxes and choices that arise from these “discoveries” are the empirical backdrop for this dissertation. The investigation follows two lines: First I ask what understandings of fetal diagnosis, deviance, selection of abortion and non-selection of abortion, the abortion committees, rituals, post-procedure social encounters and the grief, are expressed through women’s stories? Secondly I ask how the woman must be or perform in order to make her words sound legitimate (what kind of subjectivities are produced in the understandings?) These different understandings of “ultrasound and prenatal diagnostics” are tracked through seven chapters of empirical analysis. Each chapter has its own findings and focus. “The examinations” describes the non-directive genetic counselling as both a “utopia” and a necessity. The “non-directive” presumption creates a woman with a fragile autonomy – if you give her advice she will abandon her own will and follow yours. By the silent communication of these dilemmas through the withholding of opinions and advice, the women are educated into an understanding the decisions potentially to come as so problematic that the potential decisions is on the outside of the society’s moral. When the abnormalities are discovered a “state of exception” occurs. The woman may see herself as invaded, in a situation on the border between sanity and insanity. The impossible has happened, and when this could happen, anything may happen. A characteristical feature of this “state of exception” is its exclusivity- you have to experience the situation in order to understand the situation. The understanding is dependent on emotions, on having lived and felt the depth of the situation, of “hitting rock bottom”, only then the required authenticity is in place. Following the discovery of abnormalities there are decisions to be made, decisions that may change the future of the woman, the fetus and the family. The dissertation shows how this decision is a “sovereign” decision. When the abnormalities are deadly, there is no need for the woman to meet with the abortion committee. In this situation a meeting with the committee may be experienced as a formality. To some this is unproblematic, to others the formality of the proceeding is an assault on their own perception of how serious the situation is. The committee ensures the presence of a morally responsible subject capable of making autonomous and “sovereign” decisions. The committee does moral groundwork on behalf of society. Through work the system disciplines the women, and through this disciplining the committee takes part in creating the morally responsible woman. In Norway medical abortion is the routine procedure for selective abortion, the women have to give birth to the aborted fetus. This “abortionbirth” is inscribed into the midwifery/naturalist discourse, where the pain of birth plays a central, positive, part. In contrast to women’s sovereign position before the choice is made, the medicine and the midwives know what is best for these women. Women are more or less gently persuaded to see, hold, clean and dress the fetus. Through abortion birth, the “seeing and holding” and other rituals, the fetus is humanized and a production of dignity commences. In this emerging understanding meaning is drawn from birth and stillbirth. The other rituals after selective abortion also reinterpret the event. Rituals functions as a magical spell or formula. In the religious rituals like the “blessing” and the “funeral”, the dignifying and suppression of the fact that this was an abortion, are most evident. Through these rituals the fetus are given a new status as a child that was dead at birth. But this translation of what has happens needs to remain implicit in the ritual in order to enable the ritual to be a production of moral legitimacy. After the abortion the mourning process starts. It is important to a person in mourning to be seen as a legitimate mourner. To obtain this position the women finds it difficult to tell “everything” to “everyone”. The story of what happened are tentatively made in relation to other people. By telling “a little lie” (the fetus would have died anyway) it is possible for the woman to ensure understanding and legitimacy. For a woman that opted for selective abortion because of lethal abnormalities, it is likewise important to tell this – in order to avoid suspicion for “only” mild abnormalities. Analytical summary The dissertation focuses on the governing logics of biopower and their relation to social values in the field of “prenatal diagnosis” and “selective abortion” in Norway – and the meaning constructed within these logics and values. Subsequently, the main objective of the study is to describe how the field of “fetal diagnosis and selective abortion” is governed, what logics of governing that are in play. Before deviances are discovered, when the women are first introduced to ultrasound examinations and prenatal diagnostics, the field (and the individual’s thoughts and actions) are regulated through social values. Extensive genetic counselling tells stories about selective abortion as ethical and morally controversial, and the withholding of advice forebodes disaster. The existence and shape of genetic counselling mediates an understanding of a danger in progress, as a preparation for a logic of exception. During the decision, an existential, social, moral, normative and political situation unfolds. But these dimensions of the situation dissolve into a black box – a box where the decisions are made, under the woman’s own jurisdiction. The responsibility and the definition of the truth lies upon the woman. The women are in a situation in witch she is vulnerable and exposed at the same time as she is sovereign and responsible. But after the decision has been made the social deliberations are back in order. From a situation where everything was in the hands of the woman, a new situation starts where hospital routines (i.e. method of abortion), rituals, and the reactions from others, provide a moral positioning of the events, defines what happened, and gives roles to each individual. The fetus is created as a child; the aborting woman is created as a mother, and so on. The moral scale of abortions, and the normality assessments, is back in function.