This article explains how the most recommended treatment for obstructive sleep apnea, the continuous positive airway pressure device, acts and interacts with users’ bodies, sleep partners’ bodies, and cultural discourses to produce emotions and practices that generate the subjectivity of a disabled or abled person. Drawing upon in-depth interviews with OSA patients, this article illustrates how introducing CPAP devices into patients’ lives may disturb their sleep and breathing, diminish their independence, disfigure their appearance, and problematize intimacy with bed partners, thereby (...) disrupting both the fleshy body and the culturally preferred image of a healthy, independent, and attractive individual. In response, many patients reject this treatment. ability as a subjective state is shown to emerge from associations in a network composed of heterogeneous entities that have agency. That is, disabled subjectivity emerges when the device prevents individuals from accomplishing what they consider to be the essential and socially significant aspects of sleep and primarily its disembodied and interembodied aspects. (shrink)

Cet article propose d’abord une analyse de la représentation de la personne souffrant de handicap ou de troubles mentaux telle qu’elle existe dans l’appel à la désinstitutionnalisation lancé par le Comité des droits des personnes handicapées (ONU). Il montre ensuite comment cette anthropologie, exigeante et parfaitement en phase avec les idéaux d’une société où l’autonomie individuelle est un droit et un devoir de chacun, est négociée en pratique sur le terrain d’un établissement de santé mentale qui accompagne les sorties de (...) l’institution de leurs patients au terme de leur séjour. Il prend pour objet empirique un dispositif central de ce processus, les “réunions-partenaires” et les échanges qui s’y tiennent entre le patient et d’autres acteurs. Le chapitre montre que, loin de l’abstraction des textes juridiques, la perception par les soignants du patient comme un partenaire est un processus fragile. Le partenariat est toujours conditionné au fait que les soignants soient non pas inquiets par l’incapacité d’une personne à se prendre en charge, mais rassurés par la démonstration de son appétence et de ses compétences pour l’autonomie. Dans ces négociations, le patient en santé mentale est toujours potentiellement, mais jamais totalement le partenaire de sa sortie de l’institution. (shrink)

This paper examines the prevalence of the ideal of “independence” in intellectual disability care in the Netherlands. It responds to a number of scholars who have interrogated this ideal through the lens of Michel Foucault’s vocabulary of governmentality. Such analyses hold that the goal of “becoming independent” subjects people with intellectual disabilities to various constraints and limitations that ensure their continued oppression. As a result, these authors contend, the commitment to the ideal of “independence” – the “ethic of autonomy” – (...) actually threatens to become an obstacle to flourishing in the group home. This paper offers an alternative analysis. It does so by drawing on a case study taken from an ethnographic study on group home life in the Netherlands. Briefly put, the disagreement stems from differing conceptualizations of moral life. Put in the vocabulary of moral anthropologist Cheryl Mattingly, the authors propose to approach the group home more from a “first-person” perspective rather than chiefly from a “third-person” perspective. They then draw on Mattingly to cast the group home as a “moral laboratory” in which the ethic of autonomy is not just reproduced but also enacted, and in which the terms of (in)dependence constantly get renegotiated in practice. What emerges is not only a new perspective on the workings of the “ethic of autonomy” in the group home, but also an argument about the possible limitations of the vocabulary of governmentality for analysing care practices. (shrink)

This article explores the theme of the 2021 ALTER conference “norms questioned by disability,” by proposing a parallel with the process of questioning norms carried out by gender studies. After a contextualization of the role of norms in sociology and the link between the interrogation of norms and collective mobilizations, two examples of this approach are identified and illustrated by comparing gender studies and disability studies: naming the unthought (e.g. evidence of hierarchy, evidence of bicategorization), and specifying a presumed neutral (...) (by demonstrating the situated character of norms, concepts or characteristics associated with a dominant group and previously perceived as neutral or universal). Using examples from the fields of work, organizations and politics, similarities are pointed out between the modes of reasoning of the two fields of study. If disability studies have been able to benefit from a certain number of analytical achievements of gender studies, they can reciprocally offer new approaches for the latter, notably around the issue of constructivism. (shrink)

The practice of climbing by people with disabilities is part of a double societal dynamic, which is affected by a movement of massification, indoorization and commercialization of climbing, but also by the consequences of the law of February 2005 which aims to produce appropriate spaces and services to guarantee the needs of disabled people. This study, which is the result of a field survey conducted as part of an ethno-sociological approach in the Lyon area, describes the deployment of an ongoing (...) process of social innovation, the evolution of which is gradually shifting from a service that is not very or not at all marketable, located in the specialized environment, to more marketable services, located in shared spaces. It highlights a network of socio-technical actors who cohabit, linking or excluding each other according to its orientations and its progressive diffusion. From the case of climbing, this article reveals the complexity of the factors influencing sports consumption and the agencements that make them possible. It highlights the role of non-human actors but also intermediaries human actors who, by bringing people together, maintaining and constantly readapting the bridges created between worlds, make it possible to envisage the perpetuation of access to the consumption of these new services. (shrink)

Dependency functions as a keyword in care theory. However, care theorists have spelled out the ontological and moral ramifications of dependency in different and often conflicting ways. In this article, I argue that conceptual disputes about dependency betray a fundamental discordance among authors, rooted in the empirical premises of their arguments. Hence, although authors appear to share a vocabulary of dependency, they are not writing about quite the same phenomenon. I seek to elucidate these differences by teasing out and comparing (...) different conceptions of dependency found in the literature. Borrowing a phrase from Eva Kittay, I trace four “paradigm cases” of dependency: the infant, the physically disabled person, the profoundly intellectually disabled person, and the refugee. These paradigm cases serve as the empirical touchstone from which theorists extract their conceptions of dependency. Each paradigm case, moreover, permits a particular ethical sensibility toward care. How we understand and value dependency thus seems to determine how we understand and value care, and vice versa. In this way, I contend, our normative orientation toward care might influence what sorts of dependency we see—and, by extension, which forms of dependency we fail to notice. (shrink)