CAIRN-INT.INFO : International Edition

1Since the end of the 1980s and the contaminated blood scandal, the French health policy agenda has been punctuated by a series of public health issues that—despite their diverse characteristics—have seen the emergence of new mobilized actors: victims. This “victim dynamic” demonstrates the renewed involvement of patients in the management of health risks. [1] Directly “concerned” by the wrongs they condemn and the cause they defend, the victims brought together by organizations have the distinctive feature of sharing common knowledge of an illness or a painful experience. [2] Although these groups appear particularly disparate beyond this shared common experience, this specific feature is extremely important in understanding the construction of these collective mobilizations. [3]

2If we consider victim mobilizations in the context of public health issues and the characteristics that distinguish them from other forms of collective action, a strong link between such mobilizations and the issue of emotions clearly emerges. While these two subjects—victims and emotions—have both long been viewed with suspicion by sociology and political science, they are worthy of consideration. [4] Bringing them together makes it possible to shed light on two strands of the sociological analysis of mobilization: understanding how the “us” is constructed within a mobilized group, and how mobilization is constructed in the public space.

3Presenting oneself as the victim of a public health problem by joining a specialist organization is accompanied by multiple emotions, which must be considered at different levels of analysis.

4First among these are the various affective upheavals linked to experience of illness or bereavement and the biographical consequences associated with them. True “existential tests”, linked to the lived experience of an injustice or humiliation, [5] those “biographical disruptions”, overturn a way of thinking and a system of explaining the world; they influence the attitudes and reactions of the individuals who suffer them in an entirely novel way. [6] For these hurt individuals, joining a victim group is thus often linked to the search for explanations of this test and therefore to dealing with the resulting new affective order: why am I ill? How could such a medical error have occurred? Why don’t they mention us more? The biographical journeys of these individuals are thus marked by a kind of “moral shock”: a form of indignation and a feeling of injustice leading to collective action. [7] This dynamic lies at the root of a process of victimization that is both individual and collective: a form of feeling and expression of victimhood in individuals who are confronted with an experience of suffering linked to bereavement, personal health problems, or the health problems of people close to them. Yet while emotions are routinely associated with these victims’ reasons for taking action, they are insufficient to explain mobilization and may play a contradictory role in the process of engaging victims and in building collectives. [8]

5Secondly, emotions must be considered at the level of mobilization itself. By developing collective discourse and methods to raise awareness of their cause, victim groups transform and rework individually felt emotions and individually expressed emotions into socially acceptable emotives. [9] A distinction must be made here between emotions, which refer to subjective, internalized, often physical individual feelings, and emotives, which relate to an “expressive action that contributes to adapting partially inexpressible individual experiences into a system of socially recognized meanings and normative prescriptions”. [10] Emotions are thus sometimes channeled, sometimes stimulated by collective action, [11] insofar as the activist work of victim organizations consists of “raising awareness” of their cause, i.e. making a problem worthy of moral and political concern that was not previously considered in this light. [12] This awareness raising targets not only the section of the public who might be able to take the cause in hand—professionals and public authorities—but also potential new victims and group members. In this sense, the individual and collective emotions that accompany victim mobilizations contribute to the process of constructing their cause as a public health issue. [13] In this study, emotions must not therefore be understood as autonomous variables. They are always correlated to biographical disruption and to participants’ experiences of being a victim.

6In relation to individuals, I posit that it is an affective state specific to the journeys of public health victims that leads to an individual’s decision to engage with or join these collectives, with pain, anguish, and questioning often preceding indignation and a feeling of injustice. In relation to groups, I hypothesize that the emotions that are expressed and shared, contained or stimulated, but in all cases collectively reinterpreted, contribute to giving these disparate groups a form of cohesion. Emotions are one of the conditions for putting victim mobilizations into action: not sufficient, but nevertheless essential.

7From a theoretical point of view, reintroducing the analysis of emotions into victim mobilization makes it possible to reconsider various aspects of the literature relating to victims. The concept of “moral shock”—proposed by American sociologist James Jasper—most importantly provides a way of transcending the impasse represented by the concept of the focusing event, which sought to demonstrate how a tragic event can trigger mobilization and, ultimately, influence public policy. [14] This concept turns out to be ineffective in the case of public health issues, where it is not possible to isolate a foundational event, unlike in cases of catastrophes or incidents with mass casualties, for example. Bringing together the concepts of “moral shock” and “biographical disruption” allows me to further highlight the dimension of emotional journeys and investigation in regard to an experience of illness or a bereavement by focusing on both affective reactions and the aspects of socialization around this shock. [15] This perspective further enables me to transcend strategic approaches to victim engagement, [16] which are particularly ineffective in the case of public health issues because the processes of official recognition and compensation—legal action, setting up funds, etc.— turn out to be more unpredictable where it is more difficult to prove etiology and provide evidence. [17] Finally, in a more general sense, reconsidering the role of emotions in victim mobilization contributes to the debate that positions this disciplinary sub-field between a theoretical view that considers victim organizations as entirely novel mobilized entities due to the powerful emotional dimension of their cause, [18] and an opposing view that holds that these mobilizations are like any other mobilization. [19] While it has shown some value, this latter view tends to overlook the mobilizing dimension of emotions within victim organizations. I further propose an intermediary position in this debate: although not entirely removed from the logic of collective action, victim mobilizations establish their specificity on the importance of the emotions that permeate these groups because their members carry, embody, and share the wrongs they condemn. [20] Emotions make it possible to connect the dynamic of individual and collective construction of engagement with the collective dynamic of constructing a cause.

8How do individual emotional experiences contribute to constructing a victim collective and a collective cause? What are the effects of the collective on an individual’s affective state? In other words, what are the interactions and constructions shared across individual experiences, victim groups, and construction of a cause that may establish itself as an issue of public interest?

9To answer these questions, I have focused my study on one of the oldest ongoing mobilizations of public health victims in France, relating to drug toxicity: the case of diethylstilbestrol (DES).

10I will first attempt to understand how the emotions linked to a process of victimization can lead to engagement with a collective and how they build cohesion within collectives. I then propose an analysis of emotions in the rhetoric of collective action produced by various victim groups, and of their approach to publicizing the cause.

Box no 1. Study Methodology

Based on research for a doctorate on the role of victim mobilization in the construction of public health issues, defended in December 2015, my study was carried out among members of the three main French organizations relating to DES. Around fifty semi-structured interviews were conducted between 2012 and 2014. With an average duration of one hour, the interviews were conducted face to face or over the telephone. [21] Study participants were members who had responded to my call for evidence, which was communicated by the organizations via their website or email, or individuals whom I met at meetings. Participant selection variables related to family position, the specificity of sequelae, and the nature and level of involvement with collectives. In the interviews conducted, I endeavored to understand both the individual DES journeys that had led victims to join a collective, and also how they viewed the DES scandal and their expectations. Although not directly used in this article, around ten interviews were also conducted with specialist physicians, public health institutions, an elected representative, and specialist lawyers to give me an understanding of the handling of this scandal and the mobilization by key actors in direct interaction with the victims. Finally, the field of study was based on ethnographic observations of organization public meetings since 2012, social events, and scientific symposia and legal hearings related to the scandal.
In this study, emotions were understood in the same way as any other element of discourse, attitude, or practice usually studied in sociology. Observations included the lexical field of emotions in the discourse of participants (expressing pain, anger, surprise, relief, shame, etc.), increased verbal output, breaking voices, raised or calmed tones, and physical signs and specific aspects of body language such as tears, which often occurred in face-to-face and even telephone interviews (repeated sobs). I am aware that this approach is largely dependent on my own normative filters and frameworks of emotional perception but feel that this possible bias constitutes the only method of capturing emotions through the sociological approach.

When Emotions Produce Cohesion: The Processes of Victim Socialization and Social Interactions in the DES Scandal

11The DES scandal is a long-term public health scandal whose events, consequent bursts of mobilization, and resulting struggles for position must be outlined before I move on to my analysis. My study indicates that in this scandal, as in many mobilizations of public health victims, the process of victimization, i.e. the shared principles of identification with the same experience of suffering—although not natural—lays the foundations for a heterogeneous, but often lasting, engagement. [22] Despite their high level of heterogeneity, victim groups are characterized by a strong “netness”, or in other words benefit from a web of social interaction [23] and identity support that is vibrant enough to ensure their cohesion and authorize individual victims to present themselves as such. [24] This process works gradually through a form of emotional socialization within victim organizations: a continuous remediation of the affect that is both felt and expressed by individual and collective victims. In addition, depending on the way in which emotions are expressed and managed by collectives, they may reinforce the feeling of belonging among organization members. This collective configuration of victimization thus makes it possible to use “us” and gradually erase the “I” that is seen as the most “normal” way to condemn. [25]

Diethylstilbestrol, a “Monumental Medical Error” [26]

12Diethylstilbestrol or DES is a synthetic drug that was prescribed in France from 1946 to pregnant women at risk of miscarriage. From the 1950s onward, a number of studies demonstrated the placebo effect of DES and then its damaging effects in relation to children exposed in utero: cancers, infertility, multiple deformities, and genital pathologies—leading to miscarriages—were observed in these individuals in adolescence and then in adulthood. [27] Although the drug was banned in the United States in 1971, it was not until 1977 that France followed suit, after the drug had been on the market for over thirty years. Subsequently, new studies have revealed the possible effects of DES on neurodevelopment and on the development of psychiatric disorders. [28] Others have confirmed the incidence in mothers who directly consumed the product, and for the third generation (children of the children exposed in utero), due to the genetic modification impact of DES. In France, the estimated number of second-generation victims is 160,000. They are called “DES Sons and Daughters”. [29]

13In the context of this scandal, biographical disruptions center on conditions or multiple conditions with a radical effect on victims’ fertility and thus their plans to have children, which in the vast majority of cases are experienced as a fundamental part of the biographical journey of these individuals. They may also be combined with more complex conditions such as cancers, which directly threaten victims’ lives. Finally, they often involve bereavements or child disabilities that have lasting consequences in the lives of these victims.

14Beyond the information campaigns for doctors launched by the Ministry of Health in 1989, 1992, and 2003, the first law in favor of victims was not voted until 2003. [30] It allowed women who had been exposed to DES to benefit from maternity pay from the first day they finished work. Little studied by the social sciences until the beginning of this decade, the Distilbène scandal, as it was specifically known in France, is distinguished by the way it has “dragged on” since the 1980s and by the exemplary nature of failed successive warnings. [31] The problem also stands out due to the sustained and complementary mobilization efforts of victim organizations to keep attention on their cause and generate debate on this issue in the public space. [32] The construction of this mobilization is effectively characterized by the gradual emergence of three victim groups with different approaches, which swing between complementarity and struggle for position.

15Réseau DES (DES Network), founded in 1994, is the oldest active organization. Emerging from early splits between French organizations (DES France founded in 1986 and Info DES founded in 1990), this group is organized around high-profile collaborations between victims, doctors, and political and health authorities, based on a lobbying model inspired by its American counterpart DES Action. [33] Faced with institutional partners who are usually fearful of victim advocacy, the leaders of this organization feel that securing these collaborations requires them to constrain their mobilization. The organization thus initially retained a limited definition of the issue (encompassing cancers and genital abnormalities) and focused on mobilization relating to the development of medical information and political and institutional partnerships. Although the chairwoman of Réseau DES was behind the early drive for legal recognition, this collective has sustained a cautious and measured discourse in regard to the investment of potential victims in legal action, due to the significant unpredictability of court decisions regarding this issue. In the 2000s, two new groups formed, calling for the cause to branch out.

16Halte aux Hormones Artificielles pour les Grossesses (End to Artificial Hormones in Pregnancy, HHORAGES), founded in 2002, has specialized in the issue of the psychiatric effects of DES on children exposed in utero. This organization is primarily led by mothers whose children suffer or have suffered from serious psychiatric disorders. Many of them—sometimes even several siblings—have taken their own lives as a result of these diseases in adulthood. The struggle of these mothers—whose lives have been particularly devastated—also focuses on challenging the use of other hormonal treatments in women who are pregnant or looking to conceive. Led by former researchers from the Centre National de la Recherche Scientifique (French National Center for Scientific Research, CNRS), their mobilization has focused on the development of new scientific studies on DES. The organization has long been marginalized by the various actors involved in this issue—in particular doctors and political and institutional actors—but has made it possible to lay the groundwork for scientific recognition of the psychiatric effects of exposure to DES. Finally, HHORAGES supports taking novel legal action through the criminal justice system.

17The third organization, Les Filles DES (DES Daughters) was created in 2003 by a former activist from Réseau DES who wanted to “toughen up” mobilization, refocus action around issues of maternity (adoptions, surrogate mothers, etc.), and promote widespread legal action. This organization has also broadly developed interactions between victims, particularly through internet forums and social networks. Despite a more condemnatory public attitude than its older counterpart, Réseau DES, and a smaller institutional foothold, the organization and its chairwoman benefit from significant media attention. Finally, Les Filles DES have recently developed partnerships with elected representatives and other whistleblowers, including pulmonologist Irène Frachon, known for her role in the Mediator scandal.

18Due to different experiences of tragedy and statements in the public space, different emotional registers have emerged from the mobilization of DES victims. But although their approaches sometimes appear to be in competition with one another—in regard to legal action or institutional partnerships, for example—the three organizations permeate one another in numerous ways. This is indicated in particular by the very common phenomenon of victims belonging to multiple organizations.

Victims in (Activist) Education: The Construction of Heterogeneous Groups in the DES Scandal

19Contrary to many other collective mobilizations that bring together activists whose homogeneous sociobiographical characteristics predestine them to community engagement, [34] victim groups across all organizations are characterized by very disparate profiles. [35] Previous activist or partisan engagement may sometimes precede commitment in the name of victims, but the organizations make it possible for all those who engage to develop activist and professional competencies, [36] whatever their history of activism, by joining together around a small group of highly engaged individuals. [37] Victim organizations may thus constitute “systems for refreshing activism”. [38] The same disparity is seen in the intensity of engagement within groups and in the sociobiographical profiles of their members, who include a biologist, a social worker, researchers, unemployed workers, teachers, a communications officer, an in-work welfare recipient, a notary, a librarian, a non-graduate retail professional, and a retired police officer.

20Within Réseau DES, for example, very different profiles of activist traditions are represented. The chairwoman has a longstanding involvement with activism, which actually predates creation of the organization, and in order to raise awareness of DES among elected representatives used a political network built during years of activism within the French section of a political party abroad. Laura, a DES Daughter, was very involved with an organization relating to the disability of one of her children, and Déborah, a DES Mother, had been significantly involved throughout her life with family planning and cremation associations. Others, on the other hand, had discovered a taste for volunteering only when they became involved with these groups, and with a few exceptions of sport or art organizations had never had such involvement before. This was the case for Charlotte, a founding member of Réseau DES, and Viviane, an active member for over fifteen years. While individuals with activist profiles certainly have a strong presence within organization governing bodies, they are by no means alone, and many of the victims I interviewed told me that they did not belong to any other voluntary organizations. For those who did have other commitments, their parallel mobilizations were in fact often complementary to their commitment to victim organizations: involvement in adoption assistance organizations, organizations relating to child disabilities, etc. This spectrum of engagement is largely strongly correlated to the hardships of DES. In addition, such victim engagement was often evoked as coming about through some kind of chance, when searching for information, which preceded or led to indignation and a need to work for others. This observation confirms the importance of victim tests and the dimension of biographical disruption. It is these directly lived experiences of suffering, distress, anger, and indignation that condition one or more forms of engagement, regardless of an individual’s activist past. Engagement was often also presented as a way of transcending this affective state, of moving beyond the “moral shock”. [39] While a history of activism appears to encourage more marked engagement and closer proximity to the organization, this is not simply a case of seasoned activists converting their practice of engagement to an organization due to biographical disruptions linked to DES: infertility devastating one’s life plans, one’s self-image; an illness or bereavement linked to DES leading to major intergenerational family conflict and sometimes divorce; and finally, for all, a permanent fear that oneself or one’s children will develop an illness linked to the inheritance of DES in future. These biographical upheavals and the emotions correlated to them—in particular fear and anger—thus tend to maintain a form of closeness to mobilization in order to remain informed.

21It would thus appear very difficult to view the social geography of these engaged actors through the logic of dominant pre-existing social identities dictating a decision to engage. [40] Contrary to the study of organizations representing victims of the AZF catastrophe [41], study of the DES scandal, whose victim organizations have been in existence and have been reinventing themselves for over two decades, demonstrates that these collectives possess principles of cohesion that owe a great deal to facing a shared tragedy. [42] The biographical disruption that produces indignation or incomprehension—the fact of coming through a long illness, of losing a child, of fearing for one’s health due to known exposure to DES—favors commitment to an organization, regardless of the activist profile. The large number of responses to my calls for evidence must also be considered: while the majority of the individuals who responded had a low level of engagement with the organizations, the fact of wanting to testify and respond to a call for evidence strongly demonstrates their identification with the collectives and with the scandal, and their desire for people to know about the issue of DES. The disparity of engagement and activist profiles within victim groups cannot therefore be viewed as a factor of collective fragility, as there appears to be genuine identification with the issue.

22The fact of sharing the same health issues and/or bereavement attributed to the same cause—DES—thus appeared to be a very significant factor for the individuals interviewed during my study when it came to their reasons for becoming members and their feeling of belonging to the organizations. I observed the existence of a process of victim and emotional socialization within the groups, which was both direct and indirect, depending on the intensity of engagement and the type of collective joined. This process explains how collective coherence is maintained within these groups, despite sociological and activist disparities. It involves an education in victimhood—understanding jointly how one is a victim and expressing the emotions correlated to this—but also an education in activism that enables the group to equip itself with sufficient coherence to demonstrate its social existence. Victim associations are thus distinguished by their internal combination of highly disparate engagement profiles, sociobiographical profiles, and activist histories. This supports the dimension of biographical disruption in the practice of voluntary, if not activist, membership of these individuals, victims in the making. Victim socialization is in fact ultimately based on links of affective closeness and a framework of problem conception constituted around sharing a common experience of suffering.

The Collectivization of Hurt and the Elasticity of Victim Engagement

23The constitution of victim groups relies primarily on a form of affective closeness, an impression that is both immediate and constructed among the members of the organization. This characteristic provides a structure for interactions between victims and determines the social interactions that exist within groups. Meeting peers who have come through an experience of suffering equatable to one’s own in effect generates a form of closeness that transcends individual differences. Expressions of enthusiasm and relief linked to joining a voluntary group where one finally feels understood because others there are the “same” were therefore very widespread within these DES victim groups. Since they are groups in which bearing witness to one’s experience of suffering and intimacy hold an important place, interactions around feelings felt and emotions expressed are very widespread, which further reinforces the feeling of closeness between members and contributes to a way of maintaining members. [43] These links, which provide structure for victim engagements, are produced by both shared emotions and reciprocal emotions. [44] Other kinds of emotion beyond shared suffering also play a role in this process: from distancing to anger, from fear to suspicion, from relief to joy at belonging to a collective of peers and obtaining and sharing information linked to one’s experience. But the closeness to feelings and the sometimes overly affective dimension of interactions between victims sometimes require individuals to step back from the group.

From Suffering to the Affective “Community“

24Studying the nature of cohesion within DES victim organizations clearly reveals the links between processes of elective affinity, experienced due to a shared biographical disruption and thus collectively shared feelings. More specifically, in participant testimony, two characteristics were often associated by victims in establishing the links of social interaction that united them: belonging to the same group, and the solidarity that this closeness entailed. This feeling of belonging was expressed individually and collectively in relation to the organization to which participants belonged; but it was also evident in regard to a broader group of DES victims. In most cases it develops after a chaotic medical journey consisting of questions and frustration with the medical profession, which often has no specific answers to the wrongs suffered or may even deny the existence of a problem. This medical challenge constitutes a disruption to the social role of the doctor expected by patients—victims in the making—who expect a means to recover a normal social state by escaping from the deviance of illness. [45] The experience of medical denial had thus reinforced the feeling of injustice and sometimes the indignation of those interviewed.

25Rose, for example, after trying for several years to have a baby, discovered that she had a uterine malformation that prevented her from getting pregnant naturally. She continued to seek answers until an ultrasound indicated that DES was responsible. Her struggle to become a mother, gradually associated with exposure to a poisonous chemical, constituted a disruption to her life as a woman. This realization was a setback to a life plan that she saw as fundamental. This first disruption was then reinforced by her feeling of distress in the face of major contradictions among the doctors she consulted regarding the possibility of her becoming a mother, and even her ability to carry a child without putting her own life in danger, with one specialist advising her to have an abortion “for safety reasons”, when Rose finally became pregnant—a pregnancy that ended in miscarriage. She contrasted this with the power of the feeling of belonging to the collective and the relief she felt when she joined Réseau DES and Les Filles DES, even though she was initially only seeking information:


Initially, it was so I wouldn’t feel alone, to tell myself that there were other people in my situation, that I would be able to get information, contacts, maybe stories, advice on what I should do. Because when I spoke about my situation to people in the medical profession, well [...] There was definitely a lot of rejection: “No, that doesn’t exist!“ Because initially, I wasn’t looking to belong to an organization or whatever, I wanted to find doctors who would tell me what I really had and what I should do! [...] So it’s true that within two weeks [after joining the two organizations], I withdrew a little into a community. I felt very, very supported [...]
(Rose, DES Daughter, aged 43 years, La Rochelle, 23 May 2012)

27Since joining a collective where one is understood provides the feeling of belonging to a “community”, for the majority of study participants, joining one or several victim organizations constituted a response to their experience of suffering, to a medical journey correlated with a multitude of other feelings, including anger, distress, and pain.

28The affective closeness stemming from this community feeling was widely mentioned by victims, across all groups, and was also observed during the ethnographic investigation. It is interesting to note here that this affective closeness refers equally to strong and regular—although sometimes ephemeral—moments of expression and emotional sharing as to lasting friendships. Within organizations and at public meetings, people are able to cry together, demonstrate their anger and discouragement, and express their encouragement or joy in the success—even if belated—of a struggle to conceive or a legal victory. Group meetings are thus presented as a form of ritual in which emotions are expressed because interactions within the group make them possible. [46] But the—sometimes contradictory—emotions thus expressed are accepted and supported by the group rather than collectively prescribed. They are not only collectively constructed but appear to resonate in the face of feelings that are individually felt—or at least expressed as such.

29Affective closeness thus constitutes a clear relational and emotional characteristic for victims, regardless of the nature of the links uniting them. These links center on an original form of shared suffering but are also maintained because they make it possible to welcome the expression of various feelings, including anger, incomprehension, hope, and enthusiasm, with no fear of being judged because they are shared. Ultimately, while the process of victimization—and the emotions correlated to it—maintains the group and originally brought it into being, interpersonal affinities then take over and keep the collective dimension of the groups going. These specific affective interactions establish the collective identity of organizations and give coherence to a victim group that is on paper loose and disparate. But for some victims, sharing this suffering—physical or psychological in origin—may also be a reason for taking a step back. The power of this affective community must therefore be considered with caution.

The Contradictory Dynamic of the Affective Closeness Between Victims

30While shared biographical disruption and collectively equatable painful experiences constitute an anchor for victim collectives, the affective closeness that unites the members of these organizations can also be seen in terms of attraction and repulsion. This ambivalence was expressed within all the groups studied:


I did meet lots of women, and felt a bit bad for them because every time I went I felt a little dread [...] I found them very victim-like [...] how can I explain it? As if the sky had fallen in [...] OK [...] getting back to my own life, I told myself there are other hazards in life that can also disrupt a life. So you also have to reason and try to deal with things without ruining your life. That’s how I reacted. I don’t want to ruin my life with this business because otherwise it’ll be over [nervous laughter amid sobbing] and I’ll ruin the life of everyone around me.
(Pénélope, DES Daughter, 42 years, Paris, 26 June 2012)

32In evoking a feeling of dread during group meetings, and demonstrating pain linked to an unrealized desire to have a child, collectively shared with the group and expressed during our interview, Pénélope highlighted the contradictory dynamic of victim engagements. Meeting peers who are better able to understand and thus soothe may also lead to the maintenance of a state of affective fragility. Routinely expressed and never demanded, these affective links and the emotional expression linked to them may thus appear to be disabling, even suffocating for some victims, even if at one time the group had enabled them to get their lives back on track. Group meetings may even become unbearable after a few years of engagement. This phenomenon was particularly observed among members of the Réseau DES organization. The discourse of its spokespersons, and my investigation among members of this organization, indicate that Réseau DES actually distances itself from affect and emotions. The victims who identify with this organization’s method of collective action thus tend to focus their membership or engagement on other aspects of mobilization, such as medical information, rather than on sharing a collective discourse that is strongly marked by the experience of suffering, resentment, or anger.

33The overly affective dimension of the victim collective and extreme sensitivity of the issue of DES in their biographical journey thus forces some victims to step back from the group after spending time within associations. Within victim organizations, the affective closeness that unites the members of the collectives thus ultimately involves an ambivalent phenomenon of engagement that I term “elastic engagements”: between needing the group and being tempted to disengage in order to “turn the page”. [47]

34However, despite some victims’ retreat from activism, my study put the durability of this stepping back into perspective by revealing a widespread phenomenon of coming and going, a hesitant trial and error approach to mobilization, in which victims would disengage from collectives then return due to distress or need several years later. This phenomenon can be explained by the contradictory effect of the weight of emotions in these mobilizations. Another explanation relates to the specific nature of reasons for engagement within these groups, connected to an experience of illness or bereavement and to a quest for information and specific support. Victims are thus often engaged in care pathways, long-term chronic illness, and challenging adoption procedures that also require them to mobilize and fight on other fronts. The affective closeness that may be shared by members of the organizations and the multiple ways in which the collective offers support in response to affective states is thus accompanied by a certain degree of flexibility or elasticity—both structural and temporal—in victim engagement. Individuals may leave the organization, return to it, lose interest in it or engage with it more actively, or continue to follow its work even from afar. This phenomenon illustrates the power of biographical disruption in the experiences of victims enduringly marked by the scandal.

35Far from constituting a form of group fragility, the elasticity of engagement linked to the importance of feeling and the emotional expression shared by DES victims united in these organizations in fact demonstrates the affective—sometimes ambivalent—closeness that weaves links of social interaction and cohesion within these groups. While not spontaneously and simply linked to sharing an experience of common suffering, the specific links that maintain the cohesion of victim groups despite their disparity cannot be ignored. The collective management of emotions thus lies at the heart of the production of discourse by victim collectives, which develops group categories of perception and builds support for the collective group identity.

Constructing a Shared Language: Methods for Raising Awareness and the Emotional Economies of Victims

36Victim organizations are bodies within which we can observe the construction of collective discourse, a common language that supports the narrative of victims and the public health issue they condemn. Discourse effectively constitutes “a parable in which elements seized from lived experience are reformulated, reinterpreted, and reordered into a series for display”. [48] In victim mobilizations, emotions play a major role within these collective discourses, which constitute methods for raising awareness of the cause, both among the section of the public who might be able to take the problem in hand and among the group itself and its members [49] by normalizing individual emotions. [50] These narratives make it possible to activate and reactivate a form of “faith in mobilization”; they renew the “motivation for motivation”. [51] In the case of DES, the space of victim mobilization centers on three types of collective discourse and three formulations of the issue; ultimately, it also centers on three different relationships to the experience of being a victim, and thus different emotional economies, according to the group. [52]

Methods for Raising Awareness of the Victim Cause: Be Affected and Affect

37The common language used by DES victim collectives first constitutes a new support for the identity shared by the different victims. [53] As a method for raising awareness, it contributes to transforming affect into socially acceptable and legitimate emotions [54] in four ways: the material equipment and practical tools used by activists; the emotions that these latter try to generate; the discursive arguments and ideological justifications that very often accompany the mobilization of emotions; and finally, the affective reactions actually produced, which do not necessarily correspond to those initially envisaged. [55] The object of this article is primarily, however, to focus on the emotions generated by victims and their discursive arguments, as well as particular methods used by collectives that demonstrate the emotional economies of the various organizations studied. [56] Methods of raising awareness are not solely, therefore, means of action that make it possible to reach the public, a system of decision-making, and potential victims, but also “powerful auxiliaries through which activists can transform feelings—which might remain individual and inexpressive—into matters of collective concern that justify them rallying in an attempt to mobilize the greatest possible number of their contemporaries”. [57] This internalized and shifting narrative framework constitutes a central vector for the issue of identity within collectives: for their work of defining, redefining, and appropriating an issue by presenting themselves as the owners. [58] It enables victims to create meaning by constructing a solid cognitive framework, i.e. a framework for understanding and explaining their experience.

38Thus, each organization has to deal with its proximity to tragedy. Some protect themselves from and try to disengage from it, while others have made it a key part of their awareness raising strategy. The shared language is therefore largely determined by the relationship to emotions and whether they are highlighted or not by the organization. Yet the degree of condemnation within the victim rhetoric appears to be largely determinative of the legitimization of mobilization and the reception it will receive in the public space. [59] The group must therefore “symbolically master the situation”, [60] while modifying the “topic of condemnation” in order to make it sufficiently acceptable. [61] Thus, while the discourses that emerge from collectives are always based on the testimony of intimate victim experiences, their expression, in content and form, broadly differs depending on the group. This emotional complementarity has in fact contributed to constructing—and deconstructing—the cause of DES victims since the 1980s.

A Brief Typology of the Registers of Victim Rhetoric in Relation to the DES Scandal

39As I noted at the beginning of this article, the mobilization around DES is plural and composed of multiple divisions and reconfigurations. The question of victim rhetoric, of the discourse made up of arguments and counterarguments condemning the health issue communicated by these individuals lies at the heart of the differences between the French organizations. The various collectives and the victims who constitute their members do not always speak of their lived experience in the same way, and do not identify with the same discourse; they are not all victims in the same way. Nor do the collectives occupy the same position in the public space and thus they do not take action in the same way during public debate on this issue, which plays out across forums for deliberation and arenas of negotiation—this is the case with the public authorities in particular. [62] A comparative study of the organizations—Réseau DES, HHORAGES, and Les Filles DES—has therefore enabled me to outline a typology of the emotional economies of DES victims and their various forms of expression.

Réseau DES: Controlling Affect

40The Réseau DES organization is characterized by the construction of a moderate and controlled victim rhetoric. The relationship to tragedy and emotions expressed by both the spokespersons of the organization and the members that I met was often measured, although this in no way indicated a lower degree of suffering or of violence in their lived experience. The aim of “coming together“ for victims was often therefore to transcend the hurt in order to start afresh.


I think it’s useful to really show that yes, you’re a victim, but as our lives go on, we can’t be stuck for the rest of our lives in a victim struggle. Because it’s unhealthy, that kind of attitude. You can never repair the damage done, that’s an illusion! You have to break free, you have to live. [...] So in some ways what we’re actually doing is leading reflection on how to “turn the page“. But that doesn’t mean not informing yourself! But thinking along the lines of: “I’m living what I have to live, without getting bogged down in pathos“.
(DES Mother, chairwoman of Réseau DES, Mont-de-Marsan, 9 March 2012)

42This testimony clearly demonstrates how in its structure, debates, and the reflections that put the mobilization of Réseau DES into action, the question of emotions, of “pathos” and what the speaker terms “victim struggle” to describe an attitude of suffering and immobile expectation constitutes a problem to be transcended rather than exposed—the objective being to enable victims to start afresh. These aspects were expressed by the chairwoman and the management team, but they were also revealed during individual interviews with members of the organization. Similarly, my observations of the general meetings of the organization revealed a lower level of irruption of intimate hurt, anger, or individual public stories of tragedy. The way in which this victim group functions demonstrates a form of remedying personal stories through the collective, with a particular concern for credibility in the eyes of the public authorities and doctors. An opposition is thus very clearly erected between the need to mobilize for victims, to inform them and enable them to move forward, and the display of affect and attitudes considered to be immobilizing. This might even involve not overly calling and claiming oneself to be a victim, despite recognition of this status in individual interviews. The common language shared by the members of this organization, which structures their interactions, is therefore constructed around a rhetoric of stepping back from affect, from “moral shock” and so-called “victim struggle”, with an argument of credibility—and thus recruitment—aimed at potential victims but also the public authorities. This approach was further emphasized by the spokesperson of this organization because she distinguished it from the approach of the other two organizations.

“Les Filles DES”: A Powerful Rhetoric of Protest

43The victim rhetoric of Les Filles DES is based to a greater extent on a dynamic of protest around “moral shock”, indignation, and the expectation of compensation for the injustice experienced. Emphasis on the personal suffering of tragedy is more marked than in the discourse of Réseau DES. Largely focused on legal action and the right to maternity, the narrative framework of this organization thus also marks the specific identity of this collective through the prism of these specific problems. The numerous articles published in mainstream women’s magazines about the chairwoman of the organization—who has also published a book to tell her own story and “set an example” for other DES Daughters—and about the struggles of many DES Daughters to become mothers, demonstrate their specific discursive register with its focus on the concepts of struggle, injustice, the quest for compensation, and the lexical field of the diseased body, etc.

Box no 2. Press Release from Les Filles DES Organization, Published on Monday 26 May 2014 Following a Legal Decision Concerning the Chairwoman of the Organization

“Following the historic judgment relating to UCB Pharma on 22 May 2014, Les Filles DES are launching an appeal for the mobilization of all victims of DES. On Thursday 22 May 2014, the Nanterre high court held ‘the company UCB Pharma responsible for damages resulting from Ms X’s exposure to DES’. This is a legal decision without precedent in the history of DES, and the verdict should encourage other victims, men and women, to press charges against the UCB Pharma and Novartis pharmaceutical companies who marketed this synthetic hormone. Ms X, a victim of the drug and chairwoman of the Les Filles DES organization, is now launching an appeal for mobilization [...]. The medical error represented by DES is the greatest health scandal in History as the drug has damaging effects over multiple generations. [...] In mice, studies have shown harmful effects into the ninth generation. How many DES victims will there be in total? The organization Les Filles DES has fought for over ten years for all victims (with cancer, abnormalities, infertility, etc.) to receive damages. It hopes that Ms X’s judgment will set a precedent.
Appeal for all Victims
The organization Les Filles DES is launching an appeal for all victims of DES, male and female, to take action. To be informed about the harmful effects of DES and essential annual check-up, they must emerge from the shadows. It is also an appeal to unite to take legal action, before the statute of limitations expires, against pharmaceutical companies and to make legal proceedings shorter and less costly. It is vital to have one’s status as a victim recognized, for oneself, one’s family, and one’s descendants. Given the persistence of public health scandals and the all-powerful nature of certain pharmaceutical lobbying groups, it is an individual and collective responsibility.
David vs. Goliath.
Until now the victims of DES have had zero recognition or care. They are unable to benefit from the 2002 Kouchner laws nor a compensation procedure such as ONIAM, unlike the victims of Mediator. For 20 years, they have been able to count only on the workings of Justice [...]“.

44The repeated calls for mobilization and multiple lawsuits, the need for recognition of victim status, the idea of having suffered “the greatest health scandal in History”, the use of striking and often knowing expressions in regard to victim mobilizations such as “David vs. Goliath”, and the approach expressed as an unresolved and unfinished scandal: all these elements illustrate the specific nature of the combative discourse of this organization. They also mark a style of mobilization and narrative framing that constitutes and positions the identity of this group and that supports its awareness raising methods: regular and aggressive press releases, frequent statements to the press from the organization’s chairwoman, who gives victims a face, and strong social media engagement. The emotional economy of this organization, which is strongly imbued with indignation, the desire to struggle to obtain compensation, and often the expression of suffering, thus leads to the issue of DES being specifically defined around legal action, the right to maternity, and to inter-individual testimony and sharing among victims. The construction of this discursive collective logic is produced through necessity and by distinguishing itself from the main organization Réseau DES, enabling the group to welcome victims who are more inclined to identify with this new formulation of the problem.

HHORAGES: Intense Suffering

45The third organization devoted to DES victims reveals a victim rhetoric founded on even more intense affect. The voices of victims, which the organization passes on and wishes to transmit, testify not only to the suffering of families, but also to the form of exclusion often experienced by these particular victims. With their focus on the psychiatric effects of exposure to DES, which scientific studies have long struggled to confirm, members of the organization have been marginalized within the space of DES victim mobilizations. The lack of legitimacy of these victims, who have sometimes been doubted by medical professionals and other victims, tends to reinforce the experience of injustice and thus an emotional register of victimhood centered on this dimension. The experiences presented by the members of this organization are also particularly painful and delicate as they combine psychological pain—illness that is often very violent for victims and those close to them—and physical pain; they often also involve numerous bereavements of children who have taken their own lives—undoubtedly the most painful experience described during my study. Observation of a general meeting of HHORAGES—whose name echoes the message of this collective [it sounds like “orage” or storm in French]—largely confirmed the trend that was indicated by my initial individual interviews.

Box no 3. Observation Sequence at a General Meeting of the HHORAGES Organization

On 22 March 2014 the HHORAGES organization met in Paris for its general meeting. It was the first time I had been to a meeting of this organization, which has limited resources and thus only comes together at its annual meetings. In this small Parisian meeting room were gathered around forty individuals, women and men, members of the organization, and a few scientists and journalists. The advanced age of the majority of members present indicated that they were primarily DES Parents, their children often suffering from very serious psychiatric problems, which meant they had a limited ability to contribute to mobilization.
The meeting began by paying tribute to the chairwoman of the organization and “those who have departed“, the majority of the researchers who had helped the organization with its research, in particular Henri Pézerat who supported them in setting up family questionnaires but passed away in 2009. [63] Tribute was also paid to newcomers “who are discovering the friendship that binds us“. Then followed reminders of the organization’s diverse scientific, legal, and other activities. This first stage again concluded by paying tribute. The chairwoman asked in the name of HHORAGES for “justice and society to recognize the harm and current suffering of the children“ of families. Finally, she dedicated all the work of the organization to the DES Daughters and Sons who had taken their own lives. The chairwoman, who had herself lost her two children in such circumstances, then read out a list of several first names. Her voice broke, and she tried to hold back her sobs. The “presence“ of the dead and the remembrance of victims was clearer to me during this meeting than any other organization observation and gave this general meeting a clear ceremonial dimension.
Subsequently, the general meeting moved on to the first direct testimony from a victim: Rebecca. This fifty-something woman, emaciated and marked by time, sought to outline her story and family tragedy, which was highly unusual since it concerned almost all of her siblings and their descendants, in the form of a poem. Rebecca read for around twenty minutes, presenting a series of portraits of her ten brothers and sisters, some of their children, and even grandchildren. The reading was composed of a succession of tragedies and multiple pathologies—both psychological and physical—caused in her view by DES. Each portrait in the poem concluded with the same repeated refrain: “Before the birth, they gave DES to Mum to dry up her milk.“ [64] As the reading went on, the extreme tension, unease, tears from some, and sighs in the room became palpable, until a man who could no longer bear to hear this narrative cried out: “Enough!“ No doubt he found it impossible to cope with the heady nature and almost unbearable accumulation of multiple tragedies in this biographical narrative. After indignant reactions to this man’s brutal interruption, which was perceived to be an outrage, Rebecca finished her reading, punctuated with stifled sobs. Other testimonies followed over the course of the afternoon.

46In addition to confirming that the group presents itself as an emotional catalyst, [65] with meetings acting as moments for remembrance and sharing with people who understand, my observation of HHORAGES also enabled me to see how this organization makes the feelings of victims and the sharing of emotion a means of expression. Suffering is accepted; it is one of the methods of raising awareness on which the collective depends to communicate among its members and in the media, but also contributes to distancing victims from other organizations. The display of suffering through personal narratives constitutes one of the main practices of this organization, bringing members together and producing mobilization. This process is not, however, the only method of raising awareness and the only vector of the organization’s common language. It is in fact largely opposed to the other key feature of the organization’s discourse, on which it places strong focus: the search for scientific evidence through multiple studies promoted by the chairwoman of the organization, in order to finally provide a causal link between in utero exposure to DES and psychiatric disorders. The narrative register of the HHORAGES organization appears disparate but also complementary, with on the one hand the striking display of affect and suffering, and on the other hand, a search for rationalization through science. It can be likened to the “odd alliance (of reason)” described by Christophe Traïni: an analysis that both tests emotions and formulates expertise aligned with specialist knowledge. [66] Here again, the emergence of this new emotional economy and this new formation of the issue of DES has made the collective identification of new victims possible.

47An analysis of the different collective mobilizations around the issue of DES through collective discourse and awareness-raising methods thus makes it possible to understand the disparity but also complementarity of emotional approaches to and formulations of the problem of DES by different existing organizations. It confirms its routine importance in the choices that establish the principles of taking action for these victim mobilizations. They also demonstrate the relevance of combining emotional registers in the construction of victim causes—in this case in the construction of a public health issue.

Sharing Emotions: The Complementarity of Emotions in Constructing a Public Health Issue

48Several avenues of analysis can be explored in light of the different emotional economies used by DES victims in their efforts to define the health issue that they condemn.

49Firstly, I observed that the organization with the strongest political and administrative integration, Réseau DES, is the one with the most measured collective discourse and emotional register. It is also the one that offers the most regular and diverse methods of raising awareness, as it has more secure material resources than the other two collectives. This first observation is illuminating in several ways. While it indicates an easily understood intuition that accepts the need to construct a discourse free from affect in order to gain the trust of public actors fearful of a protest victim rhetoric, it primarily demonstrates the need for mobilized victims to compartmentalize their various methods of raising awareness, and the spaces and limits of emotional expression. The spokespersons of Réseau DES do not run an organization that suppresses or rejects affect, which would be counterproductive in the process of welcoming victims and building the group. But they assert an instrumental and measured form of approach to their emotional economies, which are practiced above all with the group in mind. In other words, the organization offers channels for conveying individual testimonies that may elicit compassion and a form of realization, while also presenting a collective discourse unified around the need to escape a consistently emotional attitude. This approach thus makes measured emotional expression possible while maintaining an internal narrative flow of multiple tragedies, as if to recall what unites the group.

50But the history of DES also teaches us that a single register of emotional mobilization is not sufficient. The emotional labor of each DES victim organization must also be considered within the broader process of constructing this problem in light of the efforts of the other organizations. In relation to this scandal, it is effectively the introduction of new victim emotional economies and new formulations of the problem through the creation of two new organizations taking action on different issues that has made it possible to republicize the issue of DES since the early 2000s. The HHORAGES organization has thus pushed for definitional openness in relation to the psychiatric consequences of DES, asserting the need for new scientific studies and expanding the issue into a broader problem newly formulated in the public space: endocrine disruptors. [67] This collective has also offered a new register of relationship to tragedy: families devastated by children who have committed suicide or suffered from psychiatric disorders. In parallel, the creation of the organization Les Filles DES and its chairwoman’s work to tell her story has given the cause a new figure with a strong media profile. Its powerfully personal victim rhetoric is based on an emotional register linked to the difficulties of individuals’ life journeys, but also their courage and anger. Ultimately, this approach has made it possible to humanize the issue of DES around a regular symbolic figure each time the issue reappears in the media.

51In relation to mobilization, it is therefore very much the combination of the individual expression of victim emotions, the construction of collective discourses that explain moral shock, and the dissemination of rhetoric founded on a cognitive register more distanced from emotions that has made it possible to keep the issue of DES in the public eye.

52* * *

53The study of the mobilization of DES victims—through the comparison of three existing organizations—has enabled me to confirm the relevance of emotions as a tool by analyzing the work of these groups in terms of both mobilizing characteristics and tools of mobilization. Rather than considering victim mobilizations as exceptional, spontaneous gatherings that are a clear reaction to shared suffering, my approach has consisted of rejecting an approach that is partly disconnected from this object of study: one that has rather expelled emotions, by agreeing on the primacy of victims’ other reasons for taking action, [68] the disqualifying dimension of the expression of emotions in the public space, and even the methodological difficulties of grasping these emotions. [69]

54I have demonstrated that victim mobilizations are distinguished by bringing together conventional activism and a specific emotional dimension in constructing their cause. While victim engagement may be correlated with prior activist socialization, the victim experience may also arise from vocations that are linked to the biographical disruption caused and the moral shock this has provoked. [70] The combination of these profile types ultimately makes it possible to form groups with specific motivations for coming together and reasons for becoming members. Despite the disparity of types of engagement within organizations, specific—elastic—links founded on a powerful affective closeness and on the sharing of a common painful experience maintain social interactions within groups but also among DES victims in general. Victim mobilizations are a way to handle the many emotions that arise from individually lived victim experiences. The collective cause is constructed through collectively shared and reinterpreted emotions. Through implementing their mobilization and constructing their collective cause, victim organizations produce a collective discourse that is largely determined by their relationship to tragedy. This common language embodies the emotional economy of each group of victims; it is evidence of the categories of perception and ways in which identity is supported within each organization. Victim collectives are not simply narrative and emotional gatherings, but also make it possible to reconstruct narratives and emotions that are collectively equatable, sometimes beyond the group itself.

55Thus, while I have been able to verify my initial hypotheses, my study has also enabled me to reveal a final observation. The problem of DES has been redefined and revived in the public space thanks to the coexistence of different narrative, emotional, and cognitive registers relating to this issue, which have been mobilized in parallel by different groups and different victims. In other words, I can conclude that the complementarity of victim emotional economies greatly contributes to the construction of a health issue that remains to be handled by the public authorities, and that has been dealt with only in part.

56Ultimately, emotions are both mobilizing and capable of being publicly mobilized by bringing together emotional registers that differ depending on the group and context. A public health issue is thus largely defined by the complementarity of the emotional registers presented by its victims.


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    Latté, “Des ‘mouvements émotionnels’”.
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    Latté, “Les ‘victimes’”.

Mobilizing by emotions, mobilizing emotionsthe case of diethylstilbestrol victims

Studying active victims in public health scandals makes us consider the deep link between this form of collective action and the thematic of emotions. Indeed emotions constitute a reason of taking a part in collective action, and also support the creation of groups of victims. In these groups, individuals realize the extent of the injustice experienced. Emotions then increase a sense of belonging, strengthen the collective identity of the group of victims and their socialization. Emotions can finally influence mobilization. The rhetoric of these victims and their way to publicizing the cause can also integrate these emotions. The analysis is based on the study of the scandal of Diethylstilbestrol (DES) in France.


  • Emotions
  • Victims
  • Mobilization
  • Diethylstilbestrol
Coline Salaris
A doctor of political science, Coline Salaris is a researcher affiliated with the Centre Émile Durkheim. Her publications include: “Agriculteurs victimes des pesticides: une nouvelle mobilisation collective en santé au travail”, La nouvelle revue du travail, 4, 2014, online; (with Laure Squarcioni, Hugo Canihac, Victor Marneur, and Corentin Poyet) “La perception des candidats à la présidentielle” in Céline Braconnier and Nonna Mayer (eds), Les inaudibles, sociologie politique des précaires, Paris, Presses de Sciences Po, 2015, pp. 181-200; and “Les émotions en partage dans les associations de victimes du Distilbène” in La politique à l’épreuve des émotions, Alain Faure and Emmanuel Négrier (eds), Rennes, Presses Universitaires de Rennes, 2017, pp. 65-76. Her work is centered on the construction of individual and collective processes of victimization, collective mobilizations, and their role in constructing public issues, particularly in the fields of public and environmental health (Centre Émile Durkheim, Sciences Po Bordeaux, 11 allée Ausone, 33607 Pessac, <>).
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