Focusing on the interactions between people suffering from neuromuscular diseases and their wheelchairs, the author raises the question of action: how is action made possible for people suffering from neuromuscular diseases? Starting with actor-network theory, the author shows that action not only results from distribution and delegation to heterogeneous entities but emerges from hard and lengthy work that makes the relation between them possible (or not) and transforms the entities involved. The author describes this work, called the process of adjustment, as work on the links making a person, his or her body, and his or her world. Through this work, new possibilities of action emerge for the person, but also new (dis)abilities; the person’s identity is transformed and shaped. This analysis leads to a particular conception of the person as made up through his or her relations to other entities (human and nonhuman).
Akrich, M.1992. The de-scription of technical objects. In Shaping technology, building society: Studies in sociotechnical changes, edited by W. Bijker and J. Law, 205-224. Cambridge, MA: MIT Press.
2.
Barral, C.1994. L’Association Française contre les Myopathies: Trajectoire d’une association d’usagers et construction associative d’une maladie. Sciences Sociales et Santé12 (2): 79-111.
3.
Blume, S.1997. The rhetoric and counter-rhetoric of a “bionic” technology. Science, Technology, & Human Values22:31-56.
4.
Callon, M., and J. Law. 1995. Agency and the hybrid “collectif.”South Atlantic Quarterly94 (2): 481-507.
5.
Callon, M., and V. Rabeharisoa. 1998. Reconfiguring trajectories: Collective bodies and chronic illnesses. Paper presented at the workshop Theorizing Bodies in Medical Practices, Paris, September.
6.
Despret, V. 1999. Ces émotions qui nous fabriquent. Ethnopsychologie de l’authenticité. Paris: Les Empêcheurs de Penser en Rond.
7.
Dodier, N.1993. Les arènes des habiletés techniques. Raisons Pratiques4:115-140.
8.
Dodier, N. 1995. Les hommes et les machines. Paris: Métaillé.
9.
Douglas, M.1999. La connaissance de soi. In Comment pensent les institutions, M. Douglas, 152-162. Paris: La Découverte/M.A.U.S.S.
10.
Gomart, E., and A. Hennion. 1999. A sociology of attachment: Music amateurs and drug users. In Actor network theory and after, edited by J. Law and J. Hassard, 220-247. Oxford, UK: Blackwell.
11.
Kelly, M.1992. Self, identity and radical surgery. Sociology of Health & Illness14 (3): 390-415.
12.
Ladrière, P. 1991. La notion de personne, héritière d’une longue tradition. In Biomédecine et devenir de la personne, directed by S. Novaes, 27-85. Paris: Le Seuil.
13.
Latour, B. 1993. La clef de Berlin et autres leçons d’un amateur des sciences. Paris: La Découverte.
14.
Latour, B.1999. Factures/fractures: From the concept of network to that of attachment. Anthropology and Aesthetics36:20-31.
15.
Leder, D.1990. The absent body. Chicago: University of Chicago Press.
16.
Mauss, M. 1968. Une catégorie de l’esprit humain: La notion de personne, celle de “moi.” In Sociologie et anthropologie, M. Mauss, 331-62. Paris: PUF.
17.
Merleau-Ponty, M. 1971. La phénoménologie de la perception. Paris: Gallimard.
18.
Moser, I.2003. Road traffic accidents: The ordering of subjects, bodies and disability. Oslo, Norway: Unipub.
19.
Moser, I., and J. Law. 1998a. “Making voices”: Disability, technology and articulation. Paper presented at Politics of Technology Conference, Maastricht, the Netherlands, May.
20.
Moser, I., and J. Law. 1998b. What Makes a Person? Methodology, ethics, and politics. Paper presented at the conference of the European Association for Social Studies of Technology, Lisbon, Portugal, October.
21.
Moser, I., and J. Law. 1999. Good passages, bad passages. In Actor network theory and after, edited by J. Law and J. Hassard, 196-219. Oxford, UK: Blackwell.
22.
Murphy, R. F.1990. The body silent: An anthropologist embarks on the most challenging journey of his life: Into the world of the disabled. New York: Norton.
23.
Novaes, S., dir. 1991. Biomédecine et devenir de la personne. Paris: Le Seuil.
24.
Rabeharisoa, V., and M. Callon. 2004. Patients and scientists in French muscular dystrophy research. In States of knowledge, edited by S. Jasanoff.London: Routledge.
25.
Ravaud, J.-F., and H.-J. Stiker. 2001. Inclusion/exclusion: An analysis of historical and cultural meanings. In Handbook of disability studies, edited by G. Albrecht, K. Seelman, and M. Bury, 490-512. London: Sage Ltd.
26.
Scarry, E.1985. The body in pain: The making and unmaking of the world. New York: Oxford University Press.
27.
Seymour, W.1998. Remaking the body: Rehabilitation and change. London: Routledge.
28.
Strauss, A. L. 1992. La trame de la négociation. Sociologie qualitative et interactionnisme. Paris: L’Harmattan.
29.
Suchman, L. 2002. Replicants and irreductions: Affective encounters at the interface. Paper presented at the conference of the European Association of the Study of Science and Technology, York, United Kingdom. http://www.comp.lancs.ac.uk/sociology/soc039ls.html (accessed December 12, 2001).
30.
Thévenot, L. 1994. Le régime de la familiarité. Les choses en personne. Genèse 17:72-101.
31.
Ville, I., M. Crost, J. F. Ravaud, and Tetrafigap Group. 2003. Disability and a sense of community belonging. A study among tetraplegic spinal-cord-injured persons in France. Social Science and Medicine56:321-332.
32.
Winance, M. 2001. Thèse et prothèse. Le processus d’habilitation comme fabrication de la personne. L’Association Française contre les Myopathies face au handicap. Unpublished Ph.D. dissertation, Centre de Sociologie de l’Innovation, ENSMP, Paris.
33.
Winance, M. 2003. La double expérience des personnes atteintes d’une maladie neuromusculaire: Rétraction et extension. Sciences Sociales et Santé 21 (2): 5-30.
34.
Winance, M. 2004. Pijn en handicap. Een analyse van het rehabilitatieproces. Krisis 1:7-22.
35.
Zola, I.1989. Missing pieces: A chronicle of living with a disability. Philadelphia: Temple University Press.
