This book review was published on Somatosphere as a part of Foreign correspondents series. Many thanks to Michael Hawrysh for helping me to translate and write it in English!
A Political Life is a significant book not only because it offers insight into one of the key players in the development of AIDES, but also because it is an exciting intellectual contribution to the understanding of the epidemic.
Une vie politique [A Political Life]
Daniel Defert, Interviews with P. Artières and E. Favereau, with the collaboration of Joséphine Gross, Editions du Seuil, Paris, 2014
On 25 September 1984, Daniel Defert wrote a letter to his friends proposing that they create a non-profit organization to address an emerging disease: AIDS. “In face of a medical crisis and a moral crisis, which is also an identity crisis, I propose that we create a space for reflection, solidarity and transformation,” he wrote. A few weeks later, the association AIDES (which means “help” in French) was founded. Its objective was to address the HIV/AIDS epidemic through community outreach, awareness campaigns and political lobbying. It remains the largest HIV/AIDS-related organization in France.
Thirty years later, Defert, who is a sociologist and was Michel Foucault’s partner, recounts his time at AIDES in a new book entitled Une vie politique (A Political Life). This publication is significant not only because Defert played such a key role in the HIV/AIDS movement for decades and thus has a unique perspective on the epidemic, but also because, surprisingly, the author has written very little on the subject. In spite of his involvement with AIDES, his sociological research had nothing to do with HIV, dealing mostly with the study of travel writing.
While HIV/AIDS activism in France has been the subject of several studies (Pinell, 2002; Dodier, 2003; Broqua, 2006; Le Talec, 2008; Girard, 2013), this book offers additional insight into the first years of the epidemic in France. An ethnographic and intellectual work, A Political Life is essential reading for anyone wishing to understand the birth of HIV/AIDS activism in France.
A Political Life is a biographical and reflective look at Defert’s political journey, told through personal interviews with the activist conducted by historian Philippe Artières and Eric Favereau, a journalist for the left-leaning French newspaper Libération. It also contains a second section containing previously unpublished or rare essays, speeches and articles written by Defert.
The first section of the book consists of ten biographically-oriented chapters. The first five of these explore Defert’s intellectual and political journey before the HIV/AIDS epidemic. Defert’s life, at the time, was political in more ways than one: the self-discovery of his homosexuality in France in the 1950s, his activism against the Algerian war, then his Maoist affiliations and his involvement in the Groupe d’Information sur les Prisons (Prison Information Group) during the 1970s. Defert’s trajectory is emblematic of the radicalization of activists in pre- and post-1968 France. The year 1968 is an important point of reference in French history as the country was shaken by a massive social movement, beginning with student protests and quickly expanding into a general strike. The movement was a political reaction to the conservative post-war regime of general and president Charles de Gaulle, but also a manifestation of the politicization of a generation of young men and women. May 1968 opened the door for the emergence of the feminist movement as well as the gay and lesbian liberation movement, among others. Defert and Foucault, who were Maoist sympathisers in the 1970s, later joined other social movements, notably the anti-psychiatry movement and the anti-prison movement. The common thread in all of these movements is their critical stance towards the objectification and institutionalization of individuals by the state. Therefore, these five chapters shed light onto the origins of Defert’s political philosophy, which is founded on a belief that actions taken to mitigate the HIV/AIDS epidemic and raise awareness about it should come from the grassroots rather than from governmental organizations, a stance that inevitably informed the construction and orientation of AIDES.
In Chapter 6, Defert discusses the social and historical context of Foucault’s death in June 1984. Facing the HIV/AIDS epidemic, the gay community in France was far from united, paralysed by fear of contracting the disease, misinformation, as well as the fear of the stigmatisation of gay men. On the medical front, without any treatment options, physicians did not know how to deal with the disease. Foucault’s doctors lied to Defert, telling him that Foucault did not have AIDS, though they were fully aware that he was dying of it. The experience deeply angered Defert, and he cites it as one of the factors that led him to create AIDES.
Chapter 7 outlines the origins of AIDES. Since its creation AIDES has defined itself above all as deeply involved in a social movement dedicated to awareness around HIV/AIDS, built by those afflicted by the disease and their loved ones. According to Defert, this is what permitted the group to be successful at a time in France when most homosexuals still lived in secrecy. For the founders of AIDES, one’s identity (both individual and group) as homosexual should not be the basis from which to combat the HIV/AIDS epidemic: the group distanced itself from individual confessions, both of one’s homosexuality and of one’s HIV status (“l’aveu”). Instead, the activists involved with AIDES strove to create a collective voice about the disease, rather than making the disease a rallying point for the construction of homosexual identity. It is this issue that created conflict, starting in the late 1980s, between AIDES and Act Up-Paris, a chapter of the New York-based AIDS advocacy group.
The mobilization model used by AIDES was distinct from pre-existing charitable or medical approaches to other diseases such as cancer and tuberculosis. AIDES’s model focused on a singular conception of activism around the group’s own definition of “volontaire”. In French, the term “volontaire” (“volunteer”) is more neutral than the term “bénévole” (also glossed as “volunteer”), which has a more religious and sometimes condescending connotation (as the cared for and the caregiver are not considered equals). AIDES wanted the word “volontaire” to evoke an equality between the two—it could be translated as “buddy” (as it was in the US) or “ally”. Being a “volontaire” was characterized by a commitment to grassroots activism and also to acquiring both practical and emotional skills to help those afflicted with the disease, though a training program within the organization.
This training process helped foster the development of the lay expertise that became the hallmark of AIDES and the wider societal mobilization to combat the HIV/AIDS epidemic in France. AIDES taught these “volontaires” not only how to provide support to those living with the disease, but also how to interact as equals with physicians and researchers. By doing so, AIDES introduced a new form of partnership with public health officials and the media in France. The objective was to convince them of the need for a non-coercive approach to the disease.
Quickly, the organization was able to establish its activities in many different areas: grassroots support for HIV-positive people either in hospitals or in their homes, the creation of a telephone helpline, informational meetings, prevention brochures, and other activities. The support groups created by AIDES also played a central role in the association, which Defert implicitly links to Foucault’s idea of “technologies of the self”: “If [in my vision of AIDES] I stress the importance of the support groups, it is because the special intimacy created in the groups was not centred, I believe, around personal confession but rather facilitating access to both the self and the other, as a part of the same movement (…) Through these groups, a new discourse has been produced in which the most intimate became collective and at the same time political “(p.165–6).
In Chapter 8, Defert discusses the internal conflict that caused divisions between Defert and other members of AIDES in 1986-87. The project that ignited tensions was the creation of a “sérotheque“: a databank containing blood samples of HIV-positive men, run by the association for the purpose of research. Far from being a hiccup in the organization’s history, this conflict exacerbated ongoing tensions about the strategic direction of the group. Through the “sérotheque” project, dissidents were attempting to direct the association towards a more substantial focus on medical research. For Defert, this represented a challenge to the group’s founding principles. By orienting activism towards the medical profession, he felt AIDES would be stepping away from the grassroots model it was founded on. In the end, Daniel Defert’s vision won out: AIDES remained an association of “volontaires”, organized around the lay experience of the disease. However, as a result of the conflict, many of the founders of AIDES left the group and joined another organization, Arcat-Sida (Association for research, communication, and action for access to treatment-AIDS).
Chapter 9 outlines the expansion of AIDES, as it moved beyond its Parisian origins and opened offices in other regions of France during the late 1980s. During this time, the group encountered several challenges, some linked to its expansion and others related to conflicting beliefs about the appropriate orientation of AIDES and similar groups. In the early 1990s, issues emerged around the decision to move toward the professionalization of the organization (having paid employees versus being entirely volunteer-run). At the same time, the creation of Act Up-Paris in 1989 sparked new tensions within the HIV/AIDS activist movement in France. Unlike AIDES, Act Up activists were focused more on their identity as gay, HIV-positive men. For Defert, this homosexual-identity–based orientation of the group opposed the community-based health approach that included all people affected by the disease, regardless of race, sexual orientation or gender. But the two associations also differed on strategies vis-à-vis the state: as opposed to Act Up’s highly confrontational relationship with the state, Defert offered a “pedagogy of society” (p.189), which involved a more cooperative approach and sought to create alliances between those afflicted and affected by the disease and public health officials.
In Chapter 10, Defert recounts the end of his presidency at the organization. In 1991, his successor, Arnaud Marty-Lavauzelle, a gay psychiatrist living with HIV, embodied a new image and orientation for the association. From that point forward, its actions became increasingly focused on clinical trials and international solidarity. In the conclusion, Defert looks to the past and highlights the originality of early AIDES HIV/AIDS activism: “I think this kind of associative [non-profit] work is not only to experiment, to invent answers or to fill gaps in state interventions. Its historical function is to question the moral values of a society “(p.205).
The book’s second section contains a selection of some of Defert’s political writings and communications from 1971 to 2001, consisting of fifteen articles in non-academic journals, essays in collective works on HIV/AIDS, as well as several public speeches. These rare documents were previously only available in archives and specialized libraries and inaccessible to a wide audience (Hirsch, 1991). The book notably includes his famous 1984 letter, quoted at the beginning of this article, his public speech on the patient as “a social reformer” (given in Montreal in 1989) as well as his essay on the “homosexualization” of HIV/AIDS, published in the French gay and lesbian weekly newspaper Gai Pied in 1990.
The book has a few shortcomings, most of which relate to topics left unaddressed or under-addressed. The first shortcoming is chronological: the book covers Defert’s presidency in detail (1984–1991), but only briefly discusses the rest of the organization’s history. The reader is left wondering about the author’s perspective on more recent developments in the HIV/AIDS epidemic, current forms of activism and involvement in the movement, as well as debates around prevention. The second concerns the author’s opinions of the other associations involved in the fight against HIV/AIDS. Though Act Up is mentioned, the reader is only provided with a superficial understanding of the group. Comparisons between the social movements in France versus those in other countries are also rare. As a result, Defert’s experience sometimes comes across as being isolated from the larger picture. Lastly, the author makes little reference to the research conducted in the social sciences on the epidemic. Though he himself is a sociologist, Defert does not accord much significance to academic research around HIV/AIDS, which was still only in its infancy in the 1980s, but came to play an increasingly important role through the next decade and up to the present day.
A Political Life is nonetheless a significant book not only because it offers insight into one of the key players in the development of AIDES, which remains one of the largest HIV/AIDS organizations in Europe, but also because it is an exciting intellectual contribution to the understanding of the epidemic.
Broqua Christophe. Agir pour ne pas mourir! Act Up, les homosexuels et le sida. 2006. Paris: Presses de Sciences Po
Dodier Nicolas. 2003. Leçons politiques de l’épidémie de sida. Paris: Éditions de l’EHESS
Girard Gabriel. 2013. Les homosexuels et le risque du sida. Individu, communauté et prevention. Rennes: Presses Universitaires de Rennes
Hirsch Emmanuel. 1991. AIDES. Solidaires. Paris: Éditions du Cerf
Le Talec Jean-Yves. 2008. Folles de France. Repenser l’homosexualité masculine. Paris : La découverte
Pinell Pinell (Dir.). 2002. Une épidémie politique. La lutte contre le sida en France, 1981-1996. Paris: Presses Universitaires de France