Research Programs

access to outdoor recreation
Members of the SANTESIH reception team participating in the program:
  • Eric Perera, carrier (MCU, University of Montpellier)
  • Nathalie Le Roux (Assistant Professor, University of Montpellier)
  • Sylvain Ferez (Master of Science in Clinical Medicine, University of Montpellier)
  • Rémi Richard (MCU, University of Montpellier)
  • André Galy (PAST, University of Montpellier)
  • Olivier Obin (PAST, University of Montpellier)
  • Thomas Riffaud (Assistant Professor, University of Montpellier)
  • Geoffrey Lassalle (Research Associate, University of Montpellier)
  • Gaël Villoing (MCU, University of the Antilles and French Guiana)
Background and Rationale:

Adventures in the great outdoors—which once seemed unthinkable for people with disabilities—are now becoming a reality, adding a new dimension to the disabled sports movement in France. Here, we focus on the pioneers who worked to make even the most extreme natural environments accessible, on the means they employed (innovation, networking, etc.), and on how they ultimately created the conditions for the institutionalization of certain outdoor activities, such as ski-skiing and FTT (All-Terrain Wheelchair), which we will examine. We therefore seek to understand not only the history of these key figures—often people with disabilities who took matters into their own hands—but also the role of current social movements that contribute to the development of these activities and involve human assistance and/or guides and volunteers.

Publications:
  • Perera, E., Thaler, R., and Galy, A. (2021), “The Eco-Responsible Values of All-Terrain Wheelchair Expeditions: A Way to Reinforce the Portrayal of the Difference Between People with and without Disabilities,” Revue STAPS, pp. 27–38.
  • Perera, E., Villoing, G., and Galy, A. (2020), “The Inventiveness of Off-Road Wheelchair Mountaineers: The Use of Technology to Promote Autonomy and Highlight the Contrast Between People with and without Disabilities,” *Nature & Récréation*, pp. 41–51.
  • Perera, E., Villoing, G., and Ruffie, S. (2019), “Becoming a Handiski Instructor: Embracing Slowness to Ensure a Safe Handisport Skiing Experience at Ski Resorts,” *Nature & Récréation*, pp. 21–32.
  • Perera, E., & Villoing, G. (2019), “Adjusting to Disability in Nature Tourism: The Case of a Contemporary Experience with Expeditions Using All-Terrain Wheelchairs (ATW),” *Journal of Sport and Social Science*.
  • Le Roux, N., Galy, A., and Perera, E. (2018), “The Emergence of the All-Terrain Wheelchair in France: Between DIY Projects and Innovations—The Role of the Pioneers in the Field,” *Les carnets du Labex ITEM*, Innovation and Mountain Territories.https://labexitem.hypotheses.org/680
  • Perera, E., Villoing, G., Ruffié, S., & Gosset, S. (2017), “The All-Terrain Wheelchair: A ‘Pair of Hiking Boots’—Bodily Experiences and Identity Reconfigurations,”*Science & Motricité*. https://doi.org/10.1051/sm/2017013
  • Villoing, G., Perera, E., & Le Roux, N. (2017), “The institutionalization of off-road wheelchair riding in France (1990–2015): ‘truly a sport of sharing and diversity’.” Sport in Society, “Be Disabled, Becoming Champion,” 1–14.http://www.tandfonline.com/doi/full/10.1080/17430437.2016.1273617
  • Perera, E., Villong, G. (2016), “The Pioneers of All-Terrain Wheelchairs: ‘Exploring the Mountains, but Differently’ in France from 1980 to the Present,” L’INqualifiable, Issue Zero, 39–43.http://fr.calameo.com/read/004732913c41fdc091983

AutiSport: Identifying social barriers and enablers to sports participation among people with autism spectrum disorder as they transition to adulthood.

Overcoming Obesity

Can Surgery Help People Overcome Obesity? A Longitudinal Translational Study of Postoperative Outcomes in Patients

Members of the SANTESIH reception team participating in the program:
  • Sylvain Ferez, project leader (MCU HDR, University of Montpellier)
  • Eric Perera (MCU University of Montpellier)
  • Anne Marcellini (Professor, University of Lausanne)
  • Geneviève Le-Bihan (PAST, University of Montpellier)
  • Yann Beldame (Postdoc, University of Montpellier)
  • Maguelone Rouvarel (Ph.D. candidate, University of Montpellier)
Background and Rationale:

While bariatric surgery is effective for severe obesity, weight loss often seems insufficient, and weight regain occurs over time. In addition to the threat to the ideal body shape that has been achieved, there is the fear of losing the new social relationships formed as a result of the sudden weight loss—particularly in the context of romantic relationships. Social pressure becomes overwhelming, as the fear of regaining a “fat” body is linked to the stigma associated with flabbiness and a lack of self-control.

Primary and Secondary Objectives:

The originality of this study lies in its multidisciplinary approach to the experience and management of bodily changes in obese individuals who have undergone bariatric surgery. More specifically, this longitudinal study aims to understand changes in dietary habits and physical activity over the 12 months following surgery, highlighting the interactions between biological, sensory, and social changes. In this context, the study will examine not only the effects of sudden physical changes but also how individuals cope with the upheaval in their “relationship to the body” caused by the transformation of their bodies, as well as the resulting reconfiguration of their lifestyles and bodily practices (personal care, hygiene, leisure activities).

Publications:
  • Marcellini, A., Perera, E., Rodhain, A., Ferez, S. (2016), “Body Image and Participation in Physical Activities Among People with Obesity,” Santé Publique, 28/1.
  • Fortier, V., & Marcellini, A. (eds.) (2014), *Obesity Under Scrutiny: A Transdisciplinary Analysis of an Epidemic*. Bordeaux: Les Études hospitalières, “À la croisée des regards” series.

Becoming an Adult with a Developmental Disorder: Barriers and Enablers (Devadulte-AD)

Members of the SANTESIH reception team participating in the program:
  • Anne Marcellini (University Professor, Faculty of Social and Political Sciences, University of Lausanne, and Santésih, University of Montpellier)
  • Sylvain Férez, Nathalie Le Roux, Rémi Richard (Associate Professors, Santésih, University of Montpellier)
  • Laura Silvestri and Yann Beldame (Ph.D.s in anthropology, postdoctoral researchers, Santésih, University of Montpellier)
Research Program:

This research program, which began in November 2015 and will conclude in October 2017, is funded by the Rare Diseases Foundation through the third call for proposals titled “Social Sciences and Humanities & Rare Diseases” and by the University of Montpellier. It is the result of collaboration among three organizations that bring diverse yet perfectly aligned expertise, research approaches, and objectives:

  • The Reference Center for Rare Diseases and Developmental Disorders at the Arnaud de Villeneuve University Hospital in Montpellier, directed by Pierre Sarda until June 2016 and subsequently by David Geneviève.
  • The regional health network “Living with a Developmental Disorder in Languedoc-Roussillon,” coordinated by Florence Margaill, works closely with the Reference Center.
  • The social sciences research laboratory specializing in the sociological approach to health and disability issues, Research Unit No. 4614 “Health, Education, and Disability” at the University of Montpellier, directed by Sylvain Ferez.

The term “developmental disorders” encompasses a wide variety of “rare diseases” that can lead to intellectual developmental delays, often accompanied by behavioral disorders. In our society, these two types of difficulties result in the most severe disabilities for those affected. The objective of this research is to understand how people affected by these developmental disorders can lead fulfilling adult lives. The aim is to identify the recurring barriers and enabling factors they encounter depending on the environments in which they have lived or will live (family, educational, professional, etc.). The study will focus on a population of adolescents and young adults (ages 16–25) affected by three rare chromosomal abnormalities: trisomy 21, 22q11 deletion, and Williams-Beuren syndrome. The research will be conducted using questionnaires, life-story interviews, and focus groups. The expected results will shed light on the practices and concerns of professionals in the field and families regarding the educational and career guidance of these young people, their support in social and emotional life, the management of information concerning medical labeling, and the analysis of its emotional, identity-related, familial, and social consequences. The goal, therefore, is to improve the quality of support provided to these individuals as they transition toward independent adult life.

build the prison

 "Building the Prison"

A Study of “Spatialities” in Five Belgian and French Prisons

Edited by:
  • Laurent Solini (SANTESIH EA 4614, University of Montpellier)
  • Jennifer Yeghicheyan (LERSEM-CERCE EA 4584-E1, University of Montpellier)
  • Sylvain Ferez (SANTESIH EA 4614, University of Montpellier)
Research team:
  • Jean-Charles Basson (Associate Professor, PRISSMH-SOI EA 4561, University of Toulouse 3)
  • Elsa Besson (Ph.D. candidate, History and Art Criticism, EA 1279, University of Rennes 2)
  • Alice Jaspart (FNRS Research Fellow, Center for Criminological Research ULB067, Université Libre de Bruxelles)
  • Sylvain Ferez (SANTESIH EA 4614, University of Montpellier)
  • Paul Landauer (Assistant Professor, AUSser-OCS UMR 3329, School of Architecture, Urban Planning, and Regional Development at Marne-la-Vallée)
  • Gérard Neyrand (Professor, PRISSMH-SOI EA 4561, University of Toulouse 3)
  • David Scheer (FNRS Research Fellow, Center for Criminological Research ULB067, Université Libre de Bruxelles)
  • Laurent Solini (SANTESIH EA 4614, University of Montpellier)
  • Jennifer Yeghicheyan (Postdoctoral Researcher, SANTESIH EA 4614, University of Montpellier)
Research Summary:

Punishment, control, discipline, deterrence, deprivation, reform, education, therapy, rehabilitation, and, more recently, the incorporation of certain urban principles—the functions associated with incarceration continue to multiply, even to the point of conflicting with one another. The construction of prisons—from building plans to initial sketches and daily reorganizations—is thus riddled with numerous inconsistencies that a close observation of “spatialities” brings to light. A long-term ethnographic study, conducted within five Belgian and French prisons and combined with archival research, thus enables us to understand the various ways in which spaces of incarceration are appropriated. During the design phase, when spaces are still merely conceptual; during the facility’s operation, once the spaces are inhabited, furnished, or even reconfigured; the aim is to examine the relationship between desired or tangible atmospheres and anticipated or existing uses. The functions, meanings, and even identities attributed to spaces stem primarily from their positioning, orientation, the use of natural light, the selection of certain materials or colors, the presence of decorative elements, as well as the uses for which they are intended. Ultimately, it is the spatial characteristics of prisons that best reveal, one might say, the full range of contradictions underpinning the construction of a “mosaic prison”—with its multiple missions and definitions—considered, to say the least, as the unsurpassed embodiment of punishment.

Funding:

Law and Justice Research Mission

Related publications:
  • Solini, L., Yeghicheyan, J., Ferez, S., 2019, Prisons: Uses and Appropriations of Prison Spaces, Editions de la Sorbonne, “Locus Solus,” [http://www.editions-sorbonne.fr/fr/livre/?GCOI=28405100042770]
  • Jaspart, A., Solini, L., 2016, “Promenade.” From a Study of a Juvenile Detention Center Through Its Courtyard, Champ Pénal/Penal Field, Vol. XIII, [http://champpenal.revues.org/9431]
  • Solini L., Scheer D., Yeghicheyan J., 2016, “An Open Window to the Outside”? Ecologies of Two Prison Environments, Sociology, 7, 3, 225–242, [https://sociologie.revues.org/2851]
Related seminars:
  • October 5, 2016 – “Building the Prison”
  • September 17 and 18, 2015 – “Prison Architecture: Future Perspectives”
  • June 26, 2014 – “Reflecting on Prison Architecture”
  • December 5, 2014 – “Comparing Prison Architectures”
paraperf

Edited by:

Rémi Richard

Research team:

Santesih Laboratory:

Rémi Richard

Yann Beldame

Sylvain Ferez

Eric Perera

SEP Laboratory, INSEP:

Hélène Joncheray

Valentine Duquesne

French Federation of Adapted Sports:

Elodie Couderc

Anne Marcellini

French Sesame Autism Federation:

Christine Meignien

Funding:

IRESP, CNSA

Research Summary:

The AutiSport project aims to analyze why adolescents and young adults aged 16 to 25 with ASD do or do not participate in physical activity, as well as to understand why some of them stop participating in sports as they transition into adulthood. To this end, we aim to reconstruct the various types of sports trajectories of these young people aged 16 to 25 by situating them within the broader context of their educational and professional paths, whether pursued within or outside of medical-social institutions. More specifically, the aim is to observe the impact that changes in their institutional and social trajectories—which occur as they transition to adulthood—may have on their participation in sports. Does the transition to the “mainstream” workforce or to a so-called “protected” institution—where young people aged 16 to 25 with ASD undergo new socializing experiences—encourage them to continue their sports activities, to readjust and/or transform them, or even to gradually or abruptly stop them altogether?

Overcoming Obesity

Can Surgery Help People Overcome Obesity? A Longitudinal Translational Study of Postoperative Outcomes in Patients

Members of the SANTESIH reception team participating in the program:
  • Sylvain Ferez, project leader (MCU HDR, University of Montpellier)
  • Eric Perera (MCU University of Montpellier)
  • Anne Marcellini (Professor, University of Lausanne)
  • Geneviève Le-Bihan (PAST, University of Montpellier)
  • Yann Beldame (Postdoc, University of Montpellier)
  • Maguelone Rouvarel (Ph.D. candidate, University of Montpellier)
Background and Rationale:

While bariatric surgery is effective for severe obesity, weight loss often seems insufficient, and weight regain occurs over time. In addition to the threat to the ideal body shape that has been achieved, there is the fear of losing the new social relationships formed as a result of the sudden weight loss—particularly in the context of romantic relationships. Social pressure becomes overwhelming, as the fear of regaining a “fat” body is linked to the stigma associated with flabbiness and a lack of self-control.

Primary and Secondary Objectives:

The originality of this study lies in its multidisciplinary approach to the experience and management of bodily changes in obese individuals who have undergone bariatric surgery. More specifically, this longitudinal study aims to understand changes in dietary habits and physical activity over the 12 months following surgery, highlighting the interactions between biological, sensory, and social changes. In this context, the study will examine not only the effects of sudden physical changes but also how individuals cope with the upheaval in their “relationship to the body” caused by the transformation of their bodies, as well as the resulting reconfiguration of their lifestyles and bodily practices (personal care, hygiene, leisure activities).

Publications:
  • Marcellini, A., Perera, E., Rodhain, A., Ferez, S. (2016), “Body Image and Participation in Physical Activities Among People with Obesity,” Santé Publique, 28/1.
  • Fortier, V., & Marcellini, A. (eds.) (2014), *Obesity Under Scrutiny: A Transdisciplinary Analysis of an Epidemic*. Bordeaux: Les Études hospitalières, “À la croisée des regards” series.

Becoming an Adult with a Developmental Disorder: Barriers and Enablers (Devadulte-AD)

Members of the SANTESIH reception team participating in the program:
  • Anne Marcellini (University Professor, Faculty of Social and Political Sciences, University of Lausanne, and Santésih, University of Montpellier)
  • Sylvain Férez, Nathalie Le Roux, Rémi Richard (Associate Professors, Santésih, University of Montpellier)
  • Laura Silvestri and Yann Beldame (Ph.D.s in anthropology, postdoctoral researchers, Santésih, University of Montpellier)
Research Program:

This research program, which began in November 2015 and will conclude in October 2017, is funded by the Rare Diseases Foundation through the third call for proposals titled “Social Sciences and Humanities & Rare Diseases” and by the University of Montpellier. It is the result of collaboration among three organizations that bring diverse yet perfectly aligned expertise, research approaches, and objectives:

  • The Reference Center for Rare Diseases and Developmental Disorders at the Arnaud de Villeneuve University Hospital in Montpellier, directed by Pierre Sarda until June 2016 and subsequently by David Geneviève.
  • The regional health network “Living with a Developmental Disorder in Languedoc-Roussillon,” coordinated by Florence Margaill, works closely with the Reference Center.
  • The social sciences research laboratory specializing in the sociological approach to health and disability issues, Research Unit No. 4614 “Health, Education, and Disability” at the University of Montpellier, directed by Sylvain Ferez.

The term “developmental disorders” encompasses a wide variety of “rare diseases” that can lead to intellectual developmental delays, often accompanied by behavioral disorders. In our society, these two types of difficulties result in the most severe disabilities for those affected. The objective of this research is to understand how people affected by these developmental disorders can lead fulfilling adult lives. The aim is to identify the recurring barriers and enabling factors they encounter depending on the environments in which they have lived or will live (family, educational, professional, etc.). The study will focus on a population of adolescents and young adults (ages 16–25) affected by three rare chromosomal abnormalities: trisomy 21, 22q11 deletion, and Williams-Beuren syndrome. The research will be conducted using questionnaires, life-story interviews, and focus groups. The expected results will shed light on the practices and concerns of professionals in the field and families regarding the educational and career guidance of these young people, their support in social and emotional life, the management of information concerning medical labeling, and the analysis of its emotional, identity-related, familial, and social consequences. The goal, therefore, is to improve the quality of support provided to these individuals as they transition toward independent adult life.


Past Projects

MQESP-Muco

Measuring the Quality of School and Work Environments for Adolescents and Young Adults with Cystic Fibrosis (MQESP-Muco)

Members:
  • Sylvain Ferez, Rémi Richard, Éric Perera (Associate Professors, SANTESIH EA 4614, University of Montpellier)
  • Pauline Lewis (student, University of Montpellier)
  • Damien Issanchou (Postdoctoral Researcher, SANTESIH EA 4614, University of Montpellier).
  • Laura Silvestri (Postdoctoral Researcher, SANTESIH EA 4614, University of Montpellier).
Research Program:

Medical advances in recent years have significantly transformed the life prospects of people with cystic fibrosis. Young people affected by this disease can now attend school almost as they would otherwise, pursue higher education, and so on. Nevertheless, for these adolescents and young adults who want to be “just like everyone else,” daily life is marked by doubt and anxiety, particularly the fear of failing to conceal their condition. Faced with these difficulties, one of the most common strategies is often withdrawal from social activities and reduced adherence to treatment, which can sometimes lead to abandoning care altogether. Drawing on the theoretical framework of the “social model of disability” (Fougeyrollas), this study’s primary objective is to identify the major barriers and facilitators to social participation encountered within two specific environments that patients now have the opportunity to engage with: school and the workplace.
The expected results focus on identifying the effects (positive and/or negative) of environmental variables (related to the characteristics of the environments frequented) and interactional variables (related to the variety and quality of interactions experienced) on patients’ social participation.  In light of these variables, the hypothesis that these young people’s disorders and impairments are exacerbated by their immersion in environments that have not developed the capacity to recognize their specific difficulties will be tested here. The added value of the project is to shed light on the reasons (which are not solely medical) for social, academic, professional, and even health-related disengagement (neglect of care) among adolescents and young adults with cystic fibrosis.

Funding:

Grégory Lemarchal Association

Members:
  • Nathalie Le Roux, Michaël Segon, Anne Marcellini, Marie-Christine Michel-Courrouy (SANTESIH, EA 4614, UM1).
  • Montserrat LLINARES (DISQUAVI, Blanquerna University, Barcelona)
  • Maks BANENS (Max Weber Center, UMR 5283, CNRS)
  • Stéphane CHAMPELY (CRIS, EA 647, University of Lyon 1)
  • Bruno GENDRON (Orléans Economics Laboratory, UMR 7322, TOTEM team, University of Orléans)
Research Program:

This research aims to understand the professional world in relation to disability, focusing in particular on how educational attainment and types of disabilities influence access to employment. It is part of the broader framework of policies promoting young people’s access to higher education and the professional integration of “workers with disabilities,” as reinforced by the 2005 French law and the broader European legislative framework. There is strong public demand for precise data on the effectiveness of proposed compensation systems and on equal opportunities for people with disabilities in accessing employment. This project is part of that effort. It should be noted in this regard that the only available national survey dates back to 1999 (Palauqui, Lebas, 1999).

Over this period, three research projects were funded (IRESP, 2008; MIRE-DRESS, 2010–2012; AGEFIPH, 2012–2014, currently underway). During these projects, we conducted a review of the available literature and proposed areas of focus (Le Roux, Marcellini, 2011), conducted a secondary analysis of the GENERATION 2004 survey (Céreq, 2008), and developed a questionnaire and survey protocol that was tested among students with disabilities at the University of Montpellier 1 and refined through a round of in-depth interviews (n=25). This made it possible to propose recommendations, which were submitted to policymakers, regarding the inclusion of this population in future general population surveys.

A national survey of students who have received accommodations due to a disability or health issue is currently being funded by AGEFIPH. Through numerous partnerships established with university support services for students with disabilities, the goal is to gather detailed accounts that explore various aspects of individual life trajectories (disabilities and their progression; use of support services during studies, job searches, and employment; participation in community and social organizations; daily life and time constraints).

More informationhere.

Productions:

LE ROUX, N., MARCELLINI, A. (2011). The Labor Market Integration of Students with Disabilities in France. Review of Issues and Research Directions, ALTER, Vol. 5, No. 4, 281–296.

LE ROUX, N., SEGON, M. (2011). From Education to Employment: What Pathways Are Available for Students with Disabilities?, Université Handicap Conference, Montpellier, November 19, 2011.

SEGON, M., BANENS, M., CHAMPELY, S., LE ROUX, N. (2012). The Pathways to Integration for Former Students with Disabilities: A Statistical Overview and Research Perspectives, Symposium on Work, Employment, and Public Policy, June 14–15, 2012, University of Caen.

SEGON, M., LE ROUX, N. (2012). A Study of the Outcomes of Former Students with Disabilities: A Secondary Analysis of the “Génération 2004” Study (Céreq) and an Analysis of Narratives on Social Integration, Report on the DRESS/MIRE Research Contract.

LE ROUX, N. (2012), “Community Life, Family, and Disability: The Case of Students with Disabilities,” 7th SIICLHA Conference, December 6–8, 2012, University of Rouen.

SEGON, M., LE ROUX, N., (2013). Educational Pathways and Employment Outcomes for Former Students with Disabilities: Patterns of Use of Support Programs and Identity Dynamics, Agora Débats/Jeunesses, No. 65.

LE ROUX, N., SEGON, M., (2013). The Life Trajectories of Former Students with Disabilities: A Statistical Analysis and Individuals’ Perspectives, International Conference “Disability Between Individual Trajectories and Institutional Logics: Employment, Work, and Social Policies,” April 11–12, 2013, University of Lille 3.

SEGON, M., LE ROUX, N., BANENS, M., CHAMPELY, S. (2014). What statistical data can be used to measure the pathways of young students with disabilities into the workforce?,Revue Française des Affaires Sociales, No. 1-2, 2014.

Sports for People with Disabilities

Members:

  • Anne Marcellini, Sylvain Ferez, Nathalie Le Roux, Eric Perera, Julie Thomas, Damien Issanchou, Elise Lantz, Yann Beldame, Estelle Duval, and Marie-Christine Courrouy-Michel (SANTESIH, EA 4614, UM1).
  • Nicolas Bancel, Julie Cornaton, and Stanislas Frenkiel (Institute of Sports Sciences at the University of Lausanne)
  • Sébastien Ruffié and Gaël Villoing (ACTES, University of the Antilles and French Guiana)
Research Program:

The program aimed to analyze, from a socio-historical perspective, the sports programs specifically designed for people with disabilities. It focused in particular on understanding the conditions under which these programs emerged and developed. Conducted in collaboration with the ACTES team at the University of the Antilles and Guyana (S. Ruffié, MCU), it received support from the “Research” Mission (MiRe) of the Directorate for Research, Studies, Evaluation, and Statistics (DREES) between 2009 and 2011. In addition to a section focused on the development of a specific circus program, based on PhD dissertation, it focused on studying the institutionalization of the disabled sports movement (1954–2008) in France, in connection with the international structuring of the Paralympic movement (drawing in particular on the PhD theses PhD Gaël Villoing and Damien Issanchou). To this end, he benefited from a close partnership with the French Handisport Federation (FFH). Thanks to its support, two study days were organized in October 2011.

The findings focus primarily on: 1) the evolution of organizational structures (particularly the various federations) based on secondary sources, as well as original primary sources (newsletters from various federations, administrative archives, and personal archives) that had not been previously examined; 2) on modes of mobilization and leadership careers, traced through life-narrative and practice-based interviews with several generations of leaders; 3) on in-depth knowledge of certain key associations or clubs (through the production of monographs). These findings provide a broader perspective on the history of the para-sports movement by comparing it both to the history of collective mobilizations in the field of disability (Paterson et al., 2000) and to that of collective mobilizations through sports (linked to demands for women’s inclusion or the fight against homophobic discrimination by LGBT movements).

Since 2013, the program has benefited from a new collaboration with Professor Nicolas Bancel (Institute of Sports Sciences at the University of Lausanne), who secured funding from the Swiss National Science Foundation for a PhD conducted by Julie Cornaton, co-supervised by Sylvain Ferez) and a postdoctoral fellowship (conducted by Stanislas Frenkiel) for a project titled: “A Social History of the Swiss and French Paralympic Movements and Their Elites (1960–2010).” In addition to this initial comparative study between France and Switzerland, the program is now moving toward a comparative study with the history of the French Adapted Sports Federation (FFSA), examining the specific barriers to access to elite-level sports for people with intellectual disabilities.

Productions:

Since 2010, 9 scientific articles, 11 book chapters, 1 research report, and 3 edited volumes have been produced as part of this program, in addition to 24 presentations delivered at conferences or symposia (including 13 invited talks). Three articles have been submitted to journals in the field of sports history: *The International Journal of the History of Sport*, *Stadion*, and *European Studies in Sports History*. Program members have also been asked to coordinate a special issue (related to the work carried out) of the journal *Corps* (scheduled for publication in 2015).

The Inclusion of Athletes with Intellectual Disabilities in the Paralympic Movement: An Analysis of the Sports, Institutional, Social, and Identity-Related Implications.

Members:
  • Anne Marcellini, Yann Beldame, Elise Lantz (SANTESIH, EA 4614, UM1)
Research Program:

This project aims to assess the impact of the 2009 reintegration of athletes with intellectual disabilities into the Paralympic movement. We believe there are two key points to keep in mind in this discussion:

– On the one hand, a study conducted as close as possible to the sports arena, focusing on the impact of Paralympic inclusion on athletes, the groups that support them in their athletic lives, and their usual social environments (families, workplaces, and, where applicable, medical-social facilities where they live, etc.). In this first area of research, we will adopt a biographical approach using the concepts of careers, trajectories, and branching points. The goal will be to understand how athletes with intellectual disabilities enter a high-level, Paralympic athletic career and what the socializing effects of such integration are. We will examine the conditions for athletic performance among these athletes, given that most of them are required to balance their professional or educational activities with the demands of high-level sport (daily and intensive training). We also aim to assess the potential effects of destigmatization and empowerment associated with the implementation of such a performance-oriented system for athletes whose specific characteristics include having an intellectual disability.

– Furthermore, we aim to focus our research closely on decision-makers and federal officials of the FFSA (French Federation of Adapted Sports), as well as officials from other sports organizations involved in the FFSA’s integration into the Paralympic movement. Our goal here is to study the federation’s organizational structure and institutional dynamics. This second phase will focus on the transformations within the organizations and the institution. To this end, we will analyze the career paths, practices, and discourses of decision-makers and federal officials at the FFSA (at the international, national, regional, and departmental levels), as well as officials from other sports bodies involved in the FFSA’s changing situation, in order to understand the regulatory and organizational transformations.

Funding:

This research is being conducted in collaboration with the French Federation of Adapted Sports and with its financial support.

Sports and HIV
Members:
  • Anne Marcellini, Sylvain Ferez, Nathalie Le Roux, Eric Perera, Estelle Duval, and Mélanie Perez (SANTESIH, EA 4614, UM1).
  • Julie Thomas (Max Weber Center)
  • Barbara Triandoum (University of the Antilles and Guyana)
  • Patrick Fougeyrollas (Laval University in Quebec City)
  • Isabelle Wallach (University of Quebec in Montreal).
Research Program:

The program focused on the bodily experiences and physical and sports activities of people living with HIV (PLHIV), and how these experiences are shaped—beginning with diagnosis—through interaction with the narratives and support systems offered by community-based organizations and institutions in the health and medical-social sectors. The program received funding from several research projects conducted in collaboration with colleagues from various universities.

One of the main areas of research focuses on the lived experience of HIV and social participation. Between 2009 and 2012, a national survey using questionnaires (n=619) and interviews (n=50) on “Access to Physical Activities for People Living with HIV” was conducted in partnership with A. Lomo Myazhiom (University of Strasbourg, MCU), S. Ruffié (University of the Antilles and Guyana, MCU), P. Liotard (University of Lyon 1, MCU), Stéphane Champely (University of Lyon 1, MCU), and S. Héas (University of Rennes 2, MCU), with support from Sidaction and the Île-de-France Region. At the same time, between 2011 and 2013, a study involving interviews (n=22) and participant observation of community-based initiatives (n=4) was conducted on the social participation of PLHIV in recreational activities in the Montpellier region, with support from the Research Mission (MiRe) of the Directorate for Research, Studies, Evaluation, and Statistics (DREES) of the Ministry of Social Affairs and Health. It is as part of this second project, led in collaboration with Professor Patrick Fougeyrollas (Laval University in Quebec), that Estelle Duval is pursuing her PhD.

A second area of research focuses more specifically on the history and operations of the nonprofit sector working to combat HIV in Guadeloupe. This is the subject of a partnership with two teams at the University of the Antilles and Guyana: ACTES (EA 3596), through S. Ruffié, and the CRPLC (UMR-CNRS 8053), through its director Justin Daniel, who is co-supervising Barbara PhD with Sylvain Ferez. Between 2009 and 2012, the research was conducted with funding from the research project “Civil Society Organizations Providing HIV/AIDS Care in Guadeloupe: The Role of People Living with HIV and the Role of Women,” supported by the Fondation de France and the National Agency for Research on AIDS and Hepatitis (ANRS). Since 2013 (and through 2015), they have been able to rely on financial support from the Fondation de France for the research project “Gender Relations, Contexts of Vulnerability, Situations of Violence: A Comparative Study of the Life Trajectories of Women Who Are Service Users, Volunteers, and Staff Members in Organizations Fighting HIV/AIDS in Saint Martin and Guadeloupe.”

The CIFRE (ANRT) fellowship awarded in 2013 for Mélanie PhD , in collaboration with the Sida Info Service association, is now opening up a new line of inquiry into the experience of the “contaminating body” and how it is managed among people living with “chronic infectious diseases.” Two proposals have thus recently been submitted to the ANRS and the Gilead Sciences Endowment Fund with the aim of comparing the experiences of people living with HIV (PLHIV) with those of people co-infected with HBV and HCV, or co-infected with HIV and HBV, HIV and HCV, or HIV, HBV, and HCV. A proposal for a “research initiation grant” was also submitted, again to the ANRS, to develop a study on “HIV, body image, and social participation: A Comparative Study of Four Regions in Europe (Languedoc-Roussillon), North America (Quebec and Montreal), and the Caribbean (Guadeloupe)” in collaboration with Patrick Fougeyrollas (Laval University, Quebec City) and Isabelle Wallach (University of Quebec at Montreal).

Productions:

Since 2010, 6 scientific articles, 8 book chapters, 3 research reports, and 1 edited volume have been produced as part of this program, in addition to 29 presentations delivered at conferences or symposia (including 5 invited talks). One article is currently under review (accepted with revisions) by the journal *Loisir et Société*; two are about to be submitted to the journals *ALTER* and *Sex Roles*. Given the substantial resources available to this program, a vast amount of data remains to be analyzed.