“I wanted to know more, to understand, to analyze my situation beyond a personal point of view, to place it within a philosophical analysis of a global system. This tug-of-war between the personal and the supposed objectivity of science, between activism and research, was sometimes painful, a source of misunderstanding between the academic world and me”, Puisieux Charlotte, De chair et de fer. Vivre et lutter dans une société validiste, La découverte, Paris, 2022, p.72.
Research in this field is constantly unfolding the nuances and degrees of disability, and its implications for people in the medical-social field. Knowledge is growing about the origins of disabling situations, the experiences and repercussions for the people concerned, and solutions for overcoming categories that are by nature reductive. Theoretically, the World Health Organization recognizes disability as the result of complex interactions between the experience of one (or more) biological alteration(s), such as the symptoms of a chronic disabling disease, and personal and social environmental factors. Empirically, these interactions are not easy to analyze.
En articulant les témoignages et les savoirs d’expérience des personnes en situation, les vécus -individuels et collectifs- et les théories bio-médico-sociales, la recherche tente de renouveler à la fois les catégories de ce qui peut être objet de la recherche, les thématiques abordées par la recherche, les trajectoires et les positionnements des agents de la recherche. Ce sont ces articulations complexes et inédites entre métiers, vécus, objets et sujets, mais aussi leur fécondité pour la science, que l’on se propose d’étudier au fil de ce séminaire.
"On what epistemological paradigm is contemporary knowledge built in the field of disabilities ? What ethical value(s), epistemological validity(s) (theory of knowledge) and epistemic validity(s) (of knowledge) emerge from it ? How are/should be articulated the place of each of the epistemic agents of research ?"
Interdisciplinary research in the healthcare field requires the involvement of people in real-life situations -patients, chronically ill people, carers, users, etc.-. Participatory or action research is becoming a sine qua non for responding to calls for scientific projects. Is it a political, ethical or truly epistemological injunction ? It is often difficult to determine. The material conditions of research production and the social relations involved in the co-construction of knowledge are rarely regulated.
Through a presentation of -ethos- epistemic practices and postures by all the research agents themselves, this seminar "Disability and epistemic agents" will be an opportunity for a time of sharing, exchange and reflexivity about the ethical, epistemological and epistemic issues of the field.
Project team
Marie Boeno, Doctoral student in History and Philosophy of Science at Université de Paris Cité, SPHEre Laboratory (UMR 7219), ED 623 « Savoirs, Sciences, Éducation », under the supervision of Alain Leplege (SPHERE) and co-directed by Annie Hourcade (ERIAC, Université de Rouen).
Coline Periano, Doctoral student in Philosophy of Medicine at the Ecole Normale Supérieure, at the République des savoirs Laboratory within the Doctoral School 540, under the supervision of Céline Lefève (SPHERE, Paris Cité) and Frédéric Worms (Républiques des savoirs, ENS-PSL).
French sign language translator available on request : marie.boeno@gmail.com & periano.coline@gmail.com.
DATES & PROGRAM :
- Wednesday, October 4, 2023 (webinar only)
https://u-paris.zoom.us/j/818910723...
ID de réunion : 818 9107 2370
Code secret : 597796
Seminar presentation by the coordinators.
Philippe BIZOUARN, Doctor of Philosophy, hospital practitioner in anesthesia and intensive care at Nantes University Hospital - SPHERE UMR 7219
Title : « Who is the patient in artificial heart research ? »
« 1) at the design stage : engineers seem to have forgotten the body. 2) at the time of initial implantations : isn’t the consent of the patient in terminal heart failure problematic ? 3) at the time of fine-tuning and improvement : what does the patient say ? And what does the patient do in the post-implant debriefing process ? »
- Tuesday, November 7, 2023 (ENS in Salle Berthier, 29 rue d’Ulm & webinar)
https://u-paris.zoom.us/j/867220106...
ID de réunion : 867 2201 0665
Code secret : 003909
Tiphaine LOURS, PhD student in History of Medicine - SPHERE UMR 7219
Title : « Encountering the invisible : sketching a history of the physically disabled in the 19th century through the history of tissue transplants ».
« This paper will attempt to suggest answers to the following questions : what means are available to the historian to decipher the silences of medical sources on these patients and grasp what the experience of a crippled, deformed and/or sick body is within the hospital world and society of the 19th century ? How can we account for the diversity of experiences of these invalid transplant patients ? What hypotheses can be put forward about the motivations of these patients, in order to shed light on their "agentivity" (or lack thereof) in seeking care ? Integrating these crippled people into the history of tissue transplants should thus enable a better understanding of the state of health and illness in 19th-century French society, and in particular among its poorer classes. »
Coline PERIANO, Doctoral student in Philosophy of Medicine at the Ecole Normale Supérieure - République des savoirs Laboratory within Ecole doctorale 540
Titre : « Architects’ perspectives on the bodies of users of architecture ».
« Can architecture be designed and built independently of the bodies of its users ? Which body do architecture and architects address ? While architecture, both in its practice and in its construction, seems a priori strongly linked to the body (intended to shelter, protect, heal etc.), the diversity of bodies, and particularly the bodies of people living with illnesses and/or disabilities, is difficult to think about when designing a building, even when it is intended to be a place of care or an institution (hospital, EHPAD, nursing home...). »
- Wednesday, December 06, 2023 (ENS in Salle Berthier, 29 rue d’Ulm & webinar)
https://u-paris.zoom.us/j/818064949...
ID de réunion : 818 0649 4914
Code secret : 365935
Lucile SERGENT, doctoral student in sociology - Laboratoire d’histoire des technosciences en société, CNAM, France
Titre : « Toward a sociology of the sick »
« The fact of having a chronic illness and having developed an expertise in it is sometimes singled out or instrumentalized in an academic context : proposals for calls for testimony rather than scientific papers, perpetual questioning of the postulate of distance, questioning of research methods. And yet, in other fields, the humanities and social sciences recognize and advocate the contributions of ethnographic experience and method, particularly in terms of access to the field and the development and highlighting of a particular perspective. Howard Becker, for example, points out that he was as much a researcher as a musician when he was on the stage performing, or in the auditorium asking the audience questions for his study of deviance[1]. So why should it be any different when you’re as much a patient as a researcher in the emergency waiting room, in a disposable gown in the MRI tunnel or at a research seminar ? What authors can be mobilized to build and nurture this particular posture ? »
1. Becker, H. (1985). Outsiders : Études de sociologie de la déviance. Éditions Métailié.
Julien SALABELLE, Architect and doctoral student in architecture - GERPHAU Laboratory, ENSA La Villette
Provisional title : « Presentation of workshops, Space and Museum, an example of participatory research »
- Wednesday, January 10, 2024 (webinar only)
Zoom link below :
Sujet : Séance 4 - Séminaire "Handicap & Agents épistémiques"
Heure : 10 janv. 2024 10:30 AM Paris
Rejoindre Zoom Réunion
https://u-paris.zoom.us/j/83338636353?pwd=QTdFR1FxaWplRGNOWnM2dWVWdjNYQT09
ID de réunion : 833 3863 6353
Code secret : 203150
Charlotte PUISIEUX, Doctor of Philosophy, active member of the handi-feminist collective Les Dévalideuses and Handi-parentalité association. She recently published De chair et de fer. Vivre et lutter dans une société validiste (La découverte, 2022).
Title : « Rethinking anti-validist struggles in the light of Queer : an introduction to the crip movement ».
Abstract
Rethinking disability in the light of queer requires us to look back at what brought the anti-disability and queer movements together, and thus led to the birth of Crip. We’ll take a brief look at the emergence of the social model of disability, in opposition to the medical model, and at the notion of validism. Secondly, we’ll look at feminist and queer contributions, as well as those relating to intersectionality, to understand how they have nourished the activism of disabled people.
Bertrand QUENTIN, Director of LIPHA (Laboratoire Interdisciplinaire d’Etude du Politique Hannah Arendt) (EA7373), MCF HDR habilité PR, Université Gustave Eiffel, Head of Master 1 Philosophie, "applied medical and hospital ethics" course.
Title : « Can disability be conceptualized ? »
Abstract :
« Based on our book Les invalidés, nouvelles réflexions philosophiques sur le handicap, érès, 2019, we take up the question of identity in relation to disability and note that it can be posed in the form of a question about the very reality of a concept of disability. Is there something common to the different types of disability that allows us to use the same term and recognize each disabled person as belonging to a group ("the disabled") ? The question of identity is that of recognizing a common, group identity. We shall see that the word "identity" appears in two types of discourse : that of actors and activists, and that of researchers who use it for analytical purposes. A conflict between these two uses arises if we submit to a single standard of truth. Associative efficiency is not the researcher’s aim, yet the latter can only observe a performative reality, which we shall also discuss. Is there an identity for a group called "the disabled" ? Is there a robust concept of disability ? »
- Wednesday, February 07, 2024 (webinar only)
Jérôme Bas, Doctor of Sociology - Université Paris VIII / CRESPPA-CSU
Titre : « Disability and social science research : between associative and state demand (1975-2005) »
« Presentation of a survey on the sociology of disability sociologists and psychosociologists in the period 1975-2005. This research focuses in particular on the Centre technique national d’études et de recherches sur les handicaps et les inadaptations (CTNERHI) and its interactions with public policies, management associations and social movements of disabled people. The history of this center tells us how long social science research on disability has been going on in France, and how long ethical and epistemological debates have been going on about how researchers position themselves in relation to this subject. It also shows how little autonomy this field has in relation to the social demand for expertise - whether from the State, from management associations or even from the most protestant groups. Finally, the historical sociology of disability sociologists and psychosociologists can also shed light on the current state of this field of research, which in part inherits positions and stances from the past. »
Pascale TERROM, person with reduced mobility, AFPS patient-trainer / patient-partner, dietician-nutritionist healthcare professional
Title : « Medical power : medical authoritarianism ? ».
« As an adult, can we question the relevance of medical decisions taken in childhood ? Can we recover from "oppressive" surgical after-effects ? »
If you would like to join the seminar, please click on this link
- Wednesday, March 06, 2024 (webinar only)
Agathe CAMUS, post-doctoral fellow in philosophy, EPIPHINORE project no. ANR-20-CE36-0007-01, SPHERE UMR 7219, Université Paris Cité/CNRS
Title : « Chronic illness and disability : the relevance and legitimacy of a cross-disciplinary approach ».
« IThe aim is to address the question of the relevance of a cross-disciplinary approach to chronic illness and disability, using examples drawn from her recent research on the aspiration to live a "normal" life in the context of chronic illness and multimorbidity (ANR EPIPHINORE project), but also the questions of the researcher’s position and legitimacy that she believes such an approach poses. »
Léa BAILLAT - Unité Inserm 1296 Radiations : Défense, Santé, Environnement (Université Lumière Lyon 2, et Groupe de recherche IMPAQT, Seintinelles), Charlène TAVERNON - (Unité Inserm 1296 Radiations : Défense, Santé, Environnement (Université Lumière Lyon 2) and Groupe de recherche IMPAQT, Seintinelles) and Murielle SEVENNE - (Patient-researcher, Groupe de recherche IMPAQT, Seintinelles)
Title : « Oncology and community-based research : feedback from the joint IMPAQT group on the stages and challenges of collaboration between patients and researchers and the construction of a "third knowledge" in all stages of research. »
Abstract :
Patient participation in cancer research is becoming increasingly important. This is the background to the IMPAQT community research project, which aims to promote and encourage the participation of (former) cancer patients in all stages of research. A training program has been set up to create equal collaboration between patients and researchers, so that community-based research projects can be co-constructed over the long term. This training led to the creation of the IMPAQT research group, made up of researchers and patient-researchers who have been collaborating on various projects since 2020.
The aim of this presentation will be to outline the way in which the IMPAQT group has thought about collaboration, and the approach adopted to include all stakeholders in the development process. We’ll also look at how this "third knowledge" is constructed. Finally, the experience of participating in community-based research will be reported throughout the collaboration, from the point of view of both the researchers and the patient-researchers.
- Wednesday, April 03, 2024 (webinar only)
Cyril FIORINI, PhD in Science, Technology and Society (STS), research associate at the Histoire des Technosciences en Société (HT2S) laboratory, EA 3716, Conservatoire national des arts et métiers (Cnam), project and advocacy officer at the Sciences Citoyennes association.
Title : « Le dispositif Tiers-veilleur pour accompagner les pratiques de recherche participative (co- production des savoirs) entre chercheur.e.s et groupes concernés" (The third-party watchdog mechanism to support participatory research practices (co-production of knowledge) between researchers and the groups concerned). »
« Participatory research practices require the construction of a special relationship between actors who ignore, misunderstand and sometimes even distrust each other. If power asymmetries are to be controlled and limited within a participatory research collective made up of researchers and stakeholder groups, this relationship must be based on mutual recognition of the equal legitimacy of the different types of knowledge involved. This means ensuring that all partners in the research collective are involved at every stage of the research process. The presentation will focus in particular on the Tiers-veilleur participatory research support system tested by the Sciences Citoyennes association, which is a tool for meeting this essential condition. It is now being disseminated in France through various programs designed to support participatory research practices. Still at an experimental stage, the Tiers-veilleur scheme raises a number of questions : what is the position of the supported research group ? How should it relate to the landlord funding its intervention ? What tasks can be entrusted to them ? What professional profile should the third-party monitor have ? What are the benefits ? How sustainable is such a system ? »
Géraldine REBER, patient, peer-help project manager
Title : « Stakes and consequences of hiring a project manager in a disability situation to create and coordinate a peer-aid network ».
« At a time when prejudices about disability still have a major influence on the full inclusion of people with disabilities in society, an experiment aims to create and coordinate a network of volunteer peer helpers (people with disabilities or chronic illnesses who have some reflexivity about their experiences) who work in collaboration with occupational therapists in the home to improve the prescription of technical aids. The project manager recruited is himself disabled. What are the issues and consequences of this "double role" for the respective positions of the various players involved ? »
- Wednesday, May 22, 2024 (webinar only) from 10.30 am to 12.30 pm
Marie Boeno, SPHERE (UMR 7219), Université Paris Cité, Ecole Doctorale « Savoirs, Sciences, Education » (ED 623). Thèse en préparation depuis décembre 2021 sous la direction de Alain Leplège (Laboratoire SPHère - Université Paris-Cité) and Annie Hourcade (Laboratoire ERIAC - Université de Rouen).
Mike Oliver’s emancipatory paradigm : a political-ethical injunction at the expense of epistemological requirements ?
Abstract :
« Research in the field of disability attempts to articulate testimonies, experiences - individual and collective - clinical practices and bio-medico-social theories. Generally interdisciplinary, "participatory research" or "action research", in which the participation of disabled people is claimed, tends to become a sine qua non condition for calls for projects. Is this a politico-ethical injunction, or a truly epistemic one ? Empirically, the material conditions of research production, social relations and the conditions of evaluation and justification of personal experiences within the framework of co-construction do not seem to be the subject of any normativity, either practical (and ethical) or theoretical (and epistemic). Hence the "semantic fog" mentioned by Cyril Fiorini in session 7 of this seminar on April 03, 2024.
Mike Oliver was a British sociologist. He called himself a disability rights activist. As the world’s first holder of the Chair of Disability Studies, his theses tend to establish the failure of the exclusive medical, re-educational and normalization responses to disability. The sociologist’s findings are based firstly on his experiences as a person with reduced mobility, secondly as a social worker working with disabled people, and thirdly on his scientific work. Mike Oliver’s sociology of disability is explicitly political : "the personal is political". From an empirical point of view, he called for a radical transformation in the way research is produced in the field of disability. Symmetry or reciprocity in social relations and control of the material conditions of research production by people and/or associations of disabled people. In this paper, we propose to present Mike Oliver’s emancipatory paradigm, its contexts of emergence and its theoretical principles. We will then discuss the heuristic value and epistemic and ethical risks of Oliver’s theses. We will conclude by outlining the state of our research with this proposal for a renewed epistemology attached to a two-dimensional intellectual ethic (Engel, 2019) that we would like to support. »
- June 2024 - Round table
