Autonomy and Therapy
Silja Samerski, a colleague of the late Ivan Illich, is an Assistant Professor of Sociology at the University of Hannover.
Bremen—The pregnant Ms. K. is in a quandary. After listening to the geneticist explain chromosomes and risk curves to her for an hour and a half, she now faces a momentous decision: should she have an amniocentesis to help her decide, on the basis of the predicted developmental risks, whether she wants to have her child or not? The counselor has made it very clear that he cannot advise her. She must make an "autonomous decision."
Up through the 1980s, gynecologists prescribed amniocentesis for their patients when they considered the intervention to be indicated. Nowadays, the chromosome check is one among a range of prenatal services available to a pregnant woman from which she herself must choose. Women are sold this new compulsory decision-making as an increase in freedom and "self-responsibility." "Self-empowerment" today apparently means being able to choose between a growing number of predetermined options: supermarkets with hair shampoos for every type of hair, holiday catalogs with adventure tours in 47 countries, holistic wellness with yoga, African drumming in church, and finally in the delivery room with the birth options "Caesarean section" or "vaginal." Those considered to be self-empowered today are those who can choose what they want in every situation in life.
The infantilized patient must be educated if she is to evolve into a self-empowered consumer. Nowadays, an entire cadre of specialists make a living as counselors and other professional educators who teach their clients how to make "responsible" and "autonomous" decisions. However, the "self-empowerment" that such counseling promises gives rise to harmful new dependencies. The counseled learn that they can only rely on professional diagnoses, test results and statistical values, and no longer on what they experience, feel and comprehend.
Only those who abandon their intuition and experiences can be "self-empowered." The only decision they must make is what treatment program to undergo. But they themselves bear the responsibility for any potential risks and consequential damage—after all, they made the choice themselves, informed and well aware of the facts.
Ms. K's Consultation
Back to Ms. K. Her genetic consultation is a particularly obvious example of this new form of education in decision-making. The counselor repeatedly points out that there is no way around it: Ms. K must make the decision herself. "I can only say what can be done, not what should be done—because we don't have to live with the consequences," he explains. Ms. K looks at the risk curves and the chromosome diagrams spread out on the table in front of her. Impulsively, she lays her hand on her belly. If she has the test done, she thinks, then no one can reproach her for not having done everything within her power. Yes, she's afraid of what is awaiting her with the child—a small flat, an overworked husband and not much money. On top of that, an unhealthy child? But the risk that the intervention will trigger a miscarriage... now that she is finally pregnant after so many years—Ms. K does not even want to think about it. And what if the test does not deliver the "okay" she hopes for? No, that is even less pleasant to think about. Anything but not that. Everything will be just fine. The counselor makes notes for his report. While he writes, he exhorts Ms. K again: "You do it or you don't do it, but someday you must make the decision!"
Ms. K is distressed. No matter what she decides to do, the counselor has maneuvered her into a situation where she can no longer act sensibly and decently. She can only choose which of the—more or less possible—evils she wants to accept: either the risk of miscarriage and possibly a bad test result or a disabled child and spending the rest of her life feeling that it could have been avoided. In Germany, genetic counselors alone maneuver more than 50,000 women and couples every year into this hopeless situation.
Yet, counseling expectant mothers is only the tip of the iceberg. More and more professional counselors consider it their job to bring their clients in such a quandary. No matter what the subject of the consultation is, whether it takes place at the employment office with a cancer consultant, at the Bavarian forest office, or at the Deutsche Bank: In each case, the explicit goal of the consultation is to help citizens make an "autonomous decision."
CONSULTATION IN HISTORY: THE PATH TO SELF-EMPOWERMENT
The Human in Need of Counseling
The human in need of counseling is a modern creature. Up through the 19th century, the king had his own advisor, and he could consult legal advisors in official matters, but citizens in need of counseling and the corresponding professional experts to satisfy this need did not yet exist. Today the situation has changed: from fertility counseling to pregnancy conflict counseling to death and grief counseling—humans are now in need of counseling from the cradle to the deathbed, or even beyond: in need of counseling from the prenatal to postmortem stage.
The Beginning of the Age of Consultation: The 1920s
In Germany, the age of consultation began during the Weimar welfare state. When the new republic entrusted the state bureaucracy with the task of safeguarding the health and fitness of the population, counseling and care centers mushroomed. From care centers for alcoholics, counseling centers for expectant or new mothers, and infant care centers to parent counseling, sex and marriage counseling, and career counseling, Weimar citizens were subjected to a siege of solicitude from experts for every situation in life. The working class in particular was to be taught that they should no longer organize their lives based on habits, traditions and common sense, but should observe scientifically based health regulations. Babies only received clean milk when young mothers were educated in hygiene, regular breastfeeding and healthy nutrition. With contraceptives, the sex counselor gave married couples lessons in sexual behavior and eugenic family planning.
Career Counseling: Guidance in "Rational Decision-Making"
The first counselors to engage in the task of mobilizing their clients for rational decision-making were the vocational counselors of the 1920s. They wanted to instill an awareness, especially in young people searching for jobs, that capitalist society placed demands on the choice of a career that only experts were qualified to deal with. Industry was striving for the greatest possible efficiency in exploiting workers, and the coffers of the welfare state could barely support the rising number of unemployed wage dependents. Career counseling was thus entrusted with the task of bringing "the right man to the right job." In contrast to his colleagues, the alcohol counselor who, if necessary, can commit the drinker to an institution or the sex counselor who urges couples to use a diaphragm, admonitions seemed inappropriate for the vocational counselor.
Education in Decision-Making Today
Eighty years later, we can recognize in the efforts of the Weimar vocational counselors to provide a scientific basis to the career choice of young graduates, the precursor of today's education in decision-making. Back then, however, no one talked about "self-empowerment." On the contrary, a manual on career counseling from 1919 required the counselor to employ his powers of persuasion to convince his client of the necessity of acting in such a way that he will be of the greatest benefit to the national economy. But for Ms. K in her genetic consultation, there is no necessity other than that of making a choice. "There are no scientific grounds for the test and none against it. This should also be taken into consideration," the counselor tells her with a shrug. He does not care what decision his client makes in the end; what matters is only that she make an informed choice. The goal of the consultation is no longer normative behavior, but, far more subtle, option-guided decision-making. By informing her of the calculable risks, avoidable disabilities and prenatal test options, the counselor radically reframes Ms. K's hope-laden pregnancy. The unborn child becomes a risk profile that should be carried to term only if Ms. K accepts responsibility for his existence. And she submits to this interpretation the moment she makes her decision.
The Frame: Don't Trust Your Own Senses
Ms. K's mother had given birth to her daughter without being bothered about chromosomes, the probabilities of malformations and test results. For women of her generation, pregnancy was not yet a condition that required special education or even a decision. Like most women of her generation, Ms. K's mother saw no reason to visit a physician as long as nothing was wrong with her. The ﬁrst physician she set eyes on was the gynecologist at the maternity ward when she arrived at the clinic to give birth. Until then, Ms. K's mother entrusted herself to a midwife and was "hopeful" about her unborn child. Her daughter's experience is quite different. Only one generation later, in the name of "self-empowerment," pregnant women are warned not to trust their own senses. They learn from magazines, television and friends that pregnancy is full of hidden risks and must therefore be medically supervised and managed. Her "hand-held pregnancy record" lists 52 potential risk factors that would immediately diagnose her pregnancy as "at risk." In the waiting room of the Human Genetics Institute, a glossy brochure displays the developmental stages of a fetus. In amazement, Ms. K looks at the misshapen creatures surrounded by tufts of shaggy hair. In the accompanying text, a physician warns expectant mothers to avoid alcohol, cigarettes and stress in order to minimize the risks involved in fetal development. Ms. K must learn that trusting sensory reality is deceptive.
The geneticist spends most of their consultation time informing Ms. K of the risks. He shows her a picture of wormlike structures and points out that these chromosomes occasionally get mixed up "during germ cell formation," as he calls it. For instance, a child with three instead of two small 21st chromosomes would have trisomy 21, or Down's syndrome. He explains that her child would then be mentally disabled. On the risk curve rising steeply on the right-hand side of the paper, Ms. K is situated right before this terrifying ascent. If she wishes to rule out this risk, he recommends that she have an amniocentesis. Of course, he warns, she must know that she would be taking a 0.5 percent risk of triggering a miscarriage. And from the start, every pregnant woman has a so-called "base risk" of 3–5 percent that her child is not healthy. To impress this base risk on his pregnant client, he lists what might be wrong with the child: cleft lip, open back, heart defect, genetic defects. Ms. K learns that her child might have health problems even before it is born.
The Necessary Misunderstanding
The probabilities of abnormalities, increased risks, genetic defects: all sound quite threatening to Ms. K. She assumes that the geneticist is talking about her pregnancy. Here, however, she is taken in by the serious misunderstanding that such counseling inevitably provokes. Per definitionem risks cannot refer to a person of flesh and blood, but only to a constructed "case"; never to "I" or "YOU" in an everyday statement, but only to a "case" from a statistical population.
If Ms. K were aware that the counselor was merely attributing to her the probabilistic characteristics of a fictive cohort of pregnant women, she would probably leave the room outraged. This misunderstanding explains why she is even listening to the geneticist in the first place. Only if she falls victim to the illusion that the risk figures and probability curves say something about herself and her unborn child can it seem logical for her to make the continuation of her pregnancy dependent on them.
Ms. K is worried about her unborn child. No one can give her what she wants: the certainty that everything will be all right. The geneticist obscures the chasm between her hope and the technical options he is offering. He turns her concern for her baby into a need for information that statistical calculations and genetic test results are intended to satisfy. Her "hope" for a healthy child becomes fear of calculable risks. Only when she considers probabilities to be the measure of a threat to herself can the tests appear as relief. The lab results, which "clarify" or "rule out risks," only promise her "reassurance" and "certainty" if she has learned to think of her child as calculable. Counseling turns wishes and worries into service needs.
Before seeing the genetic counselor, Ms. K visited her obstetrician. By means of ultrasound, he gave his patient the first "snapshot" of her child. Ms. K is supposed to believe that the shadows on the screen, visualized sonographic data, are an image of her unborn child. Now the geneticist requests that the pregnant woman completely abandon reality: his statistical lecture calls into question not only her corporeality but also the incalculability and uniqueness of her own being. He not only turns her into a risk profile, he also urges her to do the same with her unborn child: She is to see the future of her child in chromosome sets, rising risk curves and probability tables. She can only "make an autonomous decision" when she sees her unborn child as a risk profile, as a faceless member of various risk classes.
Decision-Making as Self-Empowerment
In the name of "self-empowerment," the geneticist asks Ms. K to decide whether she wishes to undergo amniocentesis or not. He does not wish to pressure her into taking the test. On the contrary, he offers his pregnant client not only the option of having the test but also the option of not having it. For him the option of having an amniocentesis that could lead to a possible abortion is equal to what Ms. K's mother did without being compelled to make any decision at all. She brought her child into the world without any ifs and buts. In the same way in which he calculates the risks involved in a test, the geneticist calculates in advance the risks that Ms. K is taking if she does not have an amniocentesis. Thus, the counselor models her future in such a way that whatever subsequently happens can be seen as the consequence of her decision.
The genetic counselor has imposed a burden on Ms. K that is historically unique: She is to feel responsible for the outcome of her pregnancy. If Ms. K lets the counselor persuade her that it is her task to make an informed and autonomous decision about risk-encumbered test options, then she will leave the consultation room with an unbearable burden.
Learning about chances and risks creates the illusion that managing statistical probabilities gives us power over the future. This is the latent function that the "counseling to promote autonomous decision-making" has today: It mobilizes counseled clients to make decisions that are insignificant in terms of what they are hoping for. After such a consultation, they find themselves in a pretty pickle: The future has been presented to them as a menu of options from which they must choose—whether they want to or not. Counseling to promote "self-empowerment" obliges them to feel responsible for what is done to them.