Foucault and the Government of Disability

Who is Normal? Who is Deviant? "Normality" and "Risk" in Genetic Diagnostics and Counseling

anne waldschmidt


 Who Is Normal? Who Is Deviant? “Normality” and “Risk” in Genetic Diagnostics and Counseling Normality—that seems to be the central buzzword of our time. Don’t all of us want to be as normal as possible? Is there anyone who wants to be ostracized or considered deviant? Like ideals of health, the concept of normality has gained such great suggestive power, especially in the course of the last century, that one can hardly avoid its in›uence. In the government of deviance, normality has become the decisive point of orientation. Professional discourses and social policies, rehabilitation programs and therapeutic practices, all with the aim of making normality possible for their clients and recipients, revolve around this central notion. At present, we are witnessing a substantial change in the way that society and the states in general, together with the persons concerned, negotiate the issue of deviation (see, for instance, Waldschmidt 1998). This shift in the negotiation of deviance relies upon a new conception of normality . Normality no longer implies conformity, but rather provides choices and leaves room for change. Indeed, it seems as if the notion of normality now meets the authentic needs and wishes of those people who are on the fringes of society. The line between normality and deviance is no longer rigid, or regarded as naturally given; it is shifting and variable, and is often seen as unnecessary. In today’s “normalization society,” normality is no longer considered an immutable, permanent fact of the matter ; instead, it is seen as a challenge, as something that can be designed and produced, as a phenomenon that changes with time. Normality is no longer an external constraint that society imposes on its members: it is 191 formed and shaped by acting subjects themselves. The conception of normality that currently prevails could, in other words, be termed ›exiblenormalistic . What does ›exible normalism mean? I use this term to refer to the theory of “normalism” that has been developed by the German literary scholar Jürgen Link (1996), who was himself in›uenced by the work of Foucault. When Foucault (1983, 1991, 1999) outlined his concepts of governmentality and bio-power, he stressed the importance to these concepts of a statistical conception of normality that contrasted with the juridical norms that earlier sovereign forms of power had employed. He also called attention to the “apparatuses of security” (Foucault 1991, 102) that are necessarily installed inside of a power that governs primarily by freedom, not repression , and that reigns over people by regulating and positioning them, not excluding and institutionalizing them. Even in neoliberal society, freedom is not boundless; freedom in neoliberal society is restricted by a logic of security that ensures that personal autonomy is used in a certain way. Moreover, just as freedom corresponds with security, the coin of normality has a ›ip side. Normality is concomitant with “deviation,” which will always be produced so long as people with and without disabilities strive for normality and for a life in the heart of society. When we de‹ne ourselves as normal, we also simultaneously de‹ne who should be considered as abnormal in comparison to us (Canguilhem 1974). In other words, both freedom and normality have their drawbacks, their social “costs,” and their victims. In this chapter, I use the example of genetic diagnostics and counseling to describe how normalization wishes can be harnessed and to indicate how the normalization that Foucault (1991) called “governmentality” is part and parcel of a new form of self-regime. Of course, the power of normalization is not manifested only in human genetics. Normalization strategies can be found in various areas of society. To my mind, however, the apparatuses of normalization that are applied in human genetic diagnostics and counseling highlight in a special way the impact that normality has already gained on our daily lives. Before discussing human genetics practice, I consider the implications of the concept of normality. In order to begin to explore the importance of normality in today’s society, I discuss the distinction between normality and normativity. Then I turn to consider the ›exible normalization strategies on which, in my opinion, the current normalization society—or, more precisely, its forcefulness, its legitimization, and its modernity—relies. 192
Foucault and the Government of Disability The Normalization Society
 Until the middle of the last century, normality was often facilely equated with the normative. A person was considered...