All the knowledge Joelle Palmieri has acquired through her experience of illness questions the relationships of domination and the impact of ableism on her daily life. Corinne Lepage, Esther Salmona and Peggy Pinchart cite some of the knowledge gained by patients. Drawing on the struggles of HIV-positive people and people with disabilities, Corinne proposes some radical solutions: breaking out of invisibility, keeping a record of each patient, holding politicians accountable, denouncing ableism, participating in health democracy, and giving patients food for thought. Family members and practitioners in turn share the knowledge they have acquired through contact with patients. According to Claire Llambrich, an educational sociologist, it is time to recognise patients as builders of new paradigms rather than recipients of policy. She recounts initiatives such as ETP (Therapeutic patient education) and EdE (Explicitation interview) which validate the experience acquired by patients. Finally, Corinne becomes impassioned: the most urgent task remains to politicise the treatment of fibromyalgia and to break through the invisibility reserved for patients. To do this, it is simply a matter of collecting and disseminating patients’ stories by all means possible.

Copyright © Joelle Palmieri and Virginie Jortay

Credits:
Excerpt from the podcast ‘Didier Lestrade, Act Up and the dance floor | Transmission (10)’, ARTE Radio Podcast
Excerpt from the documentary ‘Catherine Tourette-Turgis: the power of patients to take action’, Solidarum
Excerpt from the programme ‘Tomorrow: an inclusive society? “Sous les radars” with Charlotte Puiseux’, France Culture, 26 Oct. 2022
Song ‘Que sera’ by Wax Tailor, 2014

Links:
Université des patients, https://universitedespatients-sorbonne.fr
Charlotte Puiseux, ‘De chair et de fer - Vivre et lutter dans une société validiste’ (Of Flesh and Iron: Living and Fighting in an Ableist Society), La Découverte, https://www.editionsladecouverte.fr/de_chair_et_de_fer-9782348067778
The Unthought Pain – A Feminist Autopsy of Fibromyalgia, a ‘Women’s Disease’: https://joellepalmieri.org/2021/08/23/fibromyalgie-derriere-la-porte/

With: Esther Salmona (author, artist, landscape designer), Peggy Pinchart (communications and marketing strategy consultant), Corinne Lepage (actress, community educator), David Eloy (journalist specialising in social and solidarity economy issues and international solidarity), Emmanuelle Piron (nursery gardener) and Josiane Pinchart (mathematics teacher). Stéphanie Ranque-Garnier, algologist at the Marseille Public Hospital Assistance, Nadine Chard’homme, nurse at the Namur Pain Centre, Pierre Amatore, shiatsu practitioner in Marseille, and Claire Llambrich, nurse and educational sociologist.

Production team:
Writing, interviews and production: Joelle Palmieri
Editing and mixing: Virginie Jortay
Voice-over: Peggy Pierrot