Rue Saint-Denis, Paris, early 1990s. Prostitutes have to organize themselves against HIV. Activist Lydia Braggiotti decides to give them a voice and the means to act. The sociologist Anne Coppel, who accompanied her, tells the story of the Women’s Bus, a health action for and with prostitutes. To design it, Lydia Braggiotti circulated “complaint books”, in which she asked prostitutes on rue Saint-Denis to talk about their experiences and their needs. From these reflections was born an itinerant bus parked in places of prostitution in Paris. Women could come and have a coffee, talk and be listened to, and above all be treated by professionals aware of the specific health issues of prostitutes, in particular the risks associated with HIV.
Giovanna Rincón, then a trans prostitute in Italy, also discovered collective organization in the face of HIV and discrimination, she recalls: “When the AIDS epidemic began to hit disproportionately, we were confronted with a rather harsh, not to say racist and xenophobic health system. It gave me a sensitivity in terms of community awareness because there was a community that was dying and that was afraid to go to the health system. I then found myself developing my own strategies at an individual level, but also at a collective level to preserve my life, my health and my integrity in general.”.
The AIDS years, explain the former director of Aides Christian Saoult and the researcher Olivia Gross, are the birth certificate of community health, then of health democracy: the involvement of patients in the health system. Olivia Gross also speaks of the social movement of patients: “ It’s a social movement, simply because patients act like actors. They want to transform and act for the common good, like a real community. It is even an epistemic community, that is to say that they have the same knowledge, the same values and the same objectives, whatever the disease, whatever the field of health in which they intervene..”
Yvanie Caillé, suffering from kidney disease, explains how the blog where she told about her kidney transplant has become one of the biggest patient associations,
Renaloo, and what they have accomplished. It is in particular thanks to the association that we can now donate a kidney to a friend, not only to members of his family….
In the association that Giovanna Rincón founded for the rights of trans people, we are also reinventing relationships with doctors. When they come for HIV screenings on the premises of the association, they no longer wear the white coat, for example… But the Covid crisis has revealed the fragility of health democracy: it is not so easy to change the power relations in health.
A documentary by Claire Richardcarried out by Asia Khalid.
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