Movements of patients

The movements of the patients emergent at the end of the XXe century, in particular with the epidemic of AIDS. They indicate the action of Individu S taken by the Maladie on the institutional devices of Public health and that which in return the known as devices print on their lived social, even Community.

To weigh on the operation of medicine and science

Their central concerns beat about the bush of the place of the user of health in the production of knowledge about the disease which touches it (including nosologic dimension ), and of the defense of its rights. By there, they is as much the justifications evoked by the system of care and biomedical research, exclusions which they are likely to operate (like in the case of some orphan diseases), their practical implementations (the reduction of the risks as regards Toxicomanie for example) and their “missed” potentials, or their interactions with the market (the Drug company) or the State (the Health insurance) which are pointed finger.

The movements of patients adopted several modes of action which go from the support of the Patient S in their daily newspaper for the organization of the investments in research, while passing by the participation in the development of the protocols of the “therapeutic tests” (regulated stage of the medical research during which the Médicament S are tested on the patients) or, more generally, the Autoformation. The “medical democracy” whose movements of patients are a constituent share regulates on a circulation of the medical information with double direction: scientists and doctors with the patients like popularization of this information, and the patients to the scientists and doctors like “sensitizing” with the problems encountered on the “ground”.

The therapeutic projections on a side and, other, the prevalence of the world dimension of the medical and environmental problems and, in the same order of change, the complexification and the diversification of the governmental authorities of regulation of the Public health involved an increased specialization of competences of the actors of these movements. However the motivation remains the same one: not to accept more that “one knows” but who one remains impotent vis-a-vis the foreseeable consequences of what one knows.

A new militancy

The movements of patients do not assert a any political Théorie explicitly prédonnée or generalizing, but are more simply of the pragmatic answers to crises “”, one of the internal divergences to these movements in addition relating to the relevance of a research of the possible ways of their connection to other fights (like the Mouvement of the unemployed, following the diagnosis which precariousness involves a greater vulnerability with the disease).

Theoretical affiliations

For as much, and as regards France, the topic of the Santé was the subject of philosophical and sociological approaches critical having obtained a certain audience in the years 1970, of Ivan It ( Némésis medical , 1975) with André Gorz ( Écologie and political , 1978) while passing by Erving Goffman ( Asiles , 1968; Mark S , 1975), Robert Castel ( the psychiatric order , 1977) or Michel Foucault ( History of the madness at the traditional age , 1972), in particular through their criticism of enfermement psychiatric which fed partly the movement of the Antipsychiatrie. In same time Great Britain and the United States see the emergence of the first movements of people Handicapé are.

The fight against AIDS

It is still with a series of displacements which during these years had fallen under the Western history (of the cause to the identity, of the revolution to the body, as much of “points of capiton” where crossed divergent government schemes which sought their language then) that the Militant ism anti-AIDS returns, although, according to Daniel Defert, “little asset of the Social movements of this time were transferable in the invention of the answer to the radically new event which was the AIDS, which took with reverse the speeches and the effects of the sexual Libération”. The innovation held here in “a militancy cut out by a virus more than by a cause, a social scene which limit initially family and medical institution, the discovery of emotional and of felt in the social inscription, the speech on oneself in public space whereas it oneself often inexpressible in a field of is prohibited and standards”.

A production of knowledge in debates

Therapeutic activism

The term of “therapeutic activism” is essential to indicate the will to discuss and influence the mode of production of knowledge the Maladie. This one can be defined like recovering in fact, and in right, the zone of intersection and friction between the knowledge of the patients and the executives collective, public, which structure them. Known as differently and more precisely, the knowledge of the sick will be said here (by voices activists and way activist), with the double direction of the genitive:

as a design of the sick is itself intricate in a design of the place of the man in the company and the environment, since the patient is not in a pure experimental situation but in a mental medium, social and environmental whose “therapeutic activism” beckons of the problems to be treated;
as a design of the knowledge is itself intricate in a design of the place of existing (and not simply of alive) in the medical field, except pouring in a policy of the pure life, refusal of taking into account of what nourishes and constrained such knowledge, - which is it on what “therapeutic activism” has to position, as it is not carrying a model solution, but vector of production of debatable practical problems to the concrete direction where it is a question of making live a problem, to give to its multiple dimensions the means of spreading themselves and of interesting, to make debatable the conflict choices which correspond to them.

Profane expertises

Creation in 1992 of the TRT-5, groups interassociatif French of patients of the AIDS, thus carries the mark of the will to integrate a Expert ise “layman” in the lawsuit of organization of the fight against the disease, being the Médicament S of the AIDS, in the aiming of an institutional modification of the clinical tradition . The fact then translates the recognition of the irreducibility of the forms of knowledge, like basic obstacles with the alignment of the practices on conceived protocols of “outside”, that of the role of the negotiations between the various actors to conclude the “therapeutic tests”, and this as of their design, and the need for quickly integrating in the course of operation the elements which emergent in the environment of the organization.

The representation of the minorities

This aspiration with more Democracy, as one can see it in other cases of figure, mobilizing other claims of Minorité S, applies thus to the question of the Représentation, throbbing for the groups of autosupports working collectively, a reflexive way, between oneself, the individual experiment of the disease, and constituting oneself as representatives of the patients near other authorities (doctors, State, pharmaceutical laboratories): how my individual voice can become common, representative, and how can I per moment to yield it, and let others speak on my behalf?

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