Penser la relation d’aide et de soin à partir du handicap: enjeux et ambivalences.

International audienceCet article est l'éditorial d'un premier numéro spécial de la revue Alter sur la thématique "Care et handicap". Un deuxième numéro suivra. Ces deux numéros spéciaux de la revue Alter autour de la thématique « care et handicap » ont pour objectif de prolonger le débat et le dialogue initiés entre différents courants de pensée sur la nature de la relation d’aide, sur ses effets en termes de qualification et de définition des personnes (aidantes comme aidées), sur ses ambivalences et tensions inhérentes. Ils reviennent notamment sur le débat entre Disability Studies et Ethique du care

Bodies, technologies and action possibilities: when is an affordance?

Borrowed from ecological psychology, the concept of affordances is often said to offer the social study of technology a means of re-framing the question of what is, and what is not, ‘social’ about technological artefacts. The concept, many argue, enables us to chart a safe course between the perils of technological determinism and social constructivism. This article questions the sociological adequacy of the concept as conventionally deployed. Drawing on ethnographic work on the ways technological artefacts engage, and are engaged by, disabled bodies, we propose that the ‘affordances’ of technological objects are not reducible to their material constitution but are inextricably bound up with specific, historically situated modes of engagement and ways of life

Motivations for seeking experimental treatment in Japan

In this article on innovative medical treatment for serious conditions in Japan we aim to revise two widespread notions: first, that people living with severe conditions are all waiting for a cure or are impatient to try out experimental treatment, in particular regenerative medicine. Showing that motivations for cure seeking are complex and linked to somatic identity, we argue that gaining a cure also means a new social normality, which for some people narrows the only normality that is meaningful to them; and, second, that people living with a serious (latent) condition necessarily define their lives as not normal in the light of normalization. People with a condition conceptualise normal life variously and multiply in the light of both individual and collective experiences. The two revisions are crucial to attempts at understanding what makes people seek experimental medicine. Comparing the narratives of people with four different conditions – spinal cord injury, Duchenne muscular dystrophy, Diabetes Mellitus type 1 and cardiovascular disease – it becomes clear that the difference between seeking treatment or not largely depends on somatic identities; rather than through notions of (ab)normality, it is more adequately understood in terms of the experience of somatic lacking and wholeness

Sociomaterial Will-Work: Aligning Daily Wanting in Dutch Dementia Care

Legal and philosophical accounts of ‘the will’ seem insufficient when thinking about what residents of nursing homes dementia want, and how situations in which a resident wants something else than his or her care worker should be dealt with. In this chapter, I offer an alternative understanding of the will—namely as ‘done’ in sociomaterial interaction, in which it can be aligned by making it relational. Instead of dismissing ‘daily wanting’ of those living with dementia, my analysis enables thinking about it. Based on an ethnography of daily care situations in physical care provision in Dutch nursing homes for people with dementia, I propose the concept of ‘sociomaterial will-work’ to highlight how daily wanting is worked upon in the context of unfolding sociomaterial interaction. I describe ways in which care workers’ and residents’ attempt to align the other’s wanting with their own as a form of labour and as dependent on sociomaterial relations, namely by (1) sculpting moods and emotions, (2) managing attention and (3) creative negotiation involving time and materialities. I argue that we may learn something about good care from taking a closer look at these practices: in doing sociomaterial will-work care workers strive for a positive way of relating, seeking alternatives to nothing for neglecting the resident or exerting force. Indeed, sociomaterial will-work may sometimes fail, but, as is key to doing good care, even so, it keeps on trying

Turning aggression into an object of intervention: Tinkering in a crime control pilot study

Real-world experiments that test new technologies can affect policy and practice by introducing new objects of intervention through tinkering; the ad hoc work of realigning relations in the face of frictions, surprises, and disturbances that occur when introducing a technology. In a pilot study on aggression detection, tinkering moved aggression in and out of the human body. In the end, the pilot defined aggression as a set of acoustic-physical variables representing the aroused human body, alongside other signals of aggression. How aggression as an object intervention was shaped by tinkering is relevant because it involved inclusions and exclusions by the authorities who identified aggression, the methods they applied, and mandate for intervention. A focus on relations that are tinkered within a real-world experiment permits critical engagement with this format. Although the real-world experimental format is credited with producing knowledge about a technology's ‘actual’ performance, actors and events at the pilot study location were made only selectively relevant. Analyses of real-world experiments should therefore explain how experiments selectively make the world relevant, giving only particular objects of intervention a truth status

Disability Policies in France: Changes and Tensions between the Category-based, Universalist and Personalized Approaches

In this article, the authors show that the current French disability policy is traversed by conflicts between three different approaches to disability which came about at different periods in history. They begin by looking at the origins of disability policy in France. This policy was developed during the 20th century, from notions of repair, indemnification and compensation through rehabilitation. It became institutionalized in 1975, when two laws were passed, giving it the form of a category-based policy. Between 1970 and 2000, affected by the international situation, this policy came into conflict with a universalist policy. More recently there has been a desire to develop a personalized approach. Finally, the authors use two examples (taken from recent debates on the implementation in France of the new law of 11 February 2005) to show the tensions that have led to the coexistence of these three approaches within current disability policy

From repair to enhancement : the use of technical aids in the field of disability

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