Incapacité psychique et « participation sociale en réseaux » : Dépasser le « score social » vers des contributions mémorielles collectives

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Comment le numérique affecte-t-il les activités courantes et les rôles sociaux des personnes ayant des incapacités psychiques ? Comment recompose-t-il leurs identités et quelles seraient ses conséquences sur leur participation sociale (Fougeyrollas, 1998, 2010) ? Nous interrogeons l’usage du numérique par un groupe de personnes ayant des incapacités psychiques dans la ville du Havre en France et ses effets sur la construction identitaire via les traces numériques (Mille, 2013). Dans une approche méthodologique qualitative, nous observons et analysons l’élaboration des profils Facebook et leur agencement. L’éditorialisation (Vitali-Rosati, 2016) profilaire montre plusieurs modèles d’identité numérique (Cardon, 2008 ; Georges, 2008). Personnalisés et calculés, ces profils renvoient à un « score social » résultant de l’ensemble des traces numériques. Pourtant la présence numérique (Merzeau, 2010) se situe dans le temps et ne se réduit pas à la collection des traces. Ainsi nous appelons alors à investir les traces dans des contributions mémorielles valorisant les droits, les besoins et les expériences de la population ayant des incapacités psychiques. L’objectif est d’assurer un « vivre ensemble » dans le monde numérique à travers l’apprentissage permanent et l’action collective pour que les sujets puissent fonctionner avec autonomie dans la société de connaissance (CNNum, 2013). L’appropriation des traces pour des finalités d’utilité commune pourrait appuyer une « participation sociale en réseaux » des personnes souffrantes de dysfonctionnement de personnalité et d’adaptation sociale (Zribi, Sarfati, 2008).

– Ce résumé est celui d’une communication au Colloque “Regards croisés sur le handicap en contexte francophone” organisé par l’Université de Saint-Boniface et l’Université Clermont Auvergne du 12 au 15 juin 2018 – à Winnipeg (Manitoba) au Canada.

Pour consulter la vidéo de la présentation : https://www.youtube.com/watch?v=cvBaj_inshU&feature=youtu.be

Pour lire le support de la présentation : https://drive.google.com/open?id=1iAcmQk9bS1bQAEYUYv6iceilNOgkWM0L

Colloque St. Boniface 3

Voir le site du colloque : https://ustboniface.ca/rch2018/accueil

Voir le programme du colloque : https://ustboniface.ca/rch2018/file/Programme-regards-croises-1mai.pdf

Maria Fernanda Arentsen, directrice du Département d’études françaises, de langues et de littératures à l’Université de Saint-Boniface, parle du handicap et du colloque sur Radio Canada International: http://www.rcinet.ca/fr/2018/06/07/le-handicap-dans-la-francophonie-interagir-avec-les-autres-a-partir-de-notre-difference-et-de-notre-identite/

 

 

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Da interação simbólica ao rastro digital: A arquitetura da informação para uma participação social em redes

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Como entender as transformações  que a cultura digital introduziu em nossa vida? Como definir a participação social na era digital e quais são as estratégias necessárias para construir um ambiente digital inclusivo pelas populacões com incapacidades?

Essa palestra foi apresentada a convite do Governador de Estado do Acre Tião Viana e da Secretária de Estado de Comunicação Andréa Zilioi, na Biblioteca Pública em Rio Branco – Acre (Brasil) no dia 27 de dezembro de 2017.

Para ver o suporte da palestra: https://drive.google.com/open?id=19LHvUqoMBAh3zhi84U-dHAytT48kd0Fp

Para ler o resumo: http://www.agencia.ac.gov.br/pesquisador-libanes-palestra-sobre-participacao-social-no-mundo-digital/

Para ler a entrevista: http://www.agencia.ac.gov.br/pesquisador-libanes-fara-palestra-sobre-participacao-social-no-mundo-digital/

Confused symbolic interaction of schizophrenics in a psychiatric hospital in Indonesia: Digital culture for an inclusive environment and organized communication

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Surabaya, Indonesia ((Sabá, 2016)

Authors:
Hadi SABA AYON, Erlyn ERAWAN, Michael RAHARDANTO, Jaka SANTOSA SUDAGIJONO.

The social stigma of persons suffering from mental disorders is still prevalent in Indonesia. People are often embarrassed to go to psychologists or psychiatrists due to fear of being labeled as “crazy”. Disorganization characterizes the behavior of schizophrenics. Often, people blame “spirit possession” as the cause of an apparent behavior disturbance. As their personalities and capacities to achieve daily tasks are affected, they become dependent of their assistant environment to achieve their life habits (Fougeyrollas et al., 1998). How could digital environment (Doueihi, 2013) help them restructure their behavior and promote social participation? We interviewed assistants of schizophrenic patients in a psychiatric hospital in Lawang in Indonesia on October of 2016. This survey shed light on the perception from healthcare providers of mental disorders, and their understanding of digital and social participation. The content analysis of the interviews showed that the understanding of the problem of mental disorders is limited to difficulties the patients face in social interaction and communication. Moreover, patients lack the support of the social environment, who could help them overcome their sufferings. As for digital, it boosts the patient’s capacity to communicate and express oneself. On the other hand, it carries the risk of addictions and laziness. We call for a transliteracy for users to enhance their abilities in communication but also in treatment of digital information (to search, to organize, to share). We suggest a digital activity based on creating and developing an inclusive digital environment. This construction passes by producing and editorializing content (Vitali-Rosati, 2016) about their lives, their needs and their rights, then archiving these constructions (Crozat, 2016) in a collaborative memorial project. The aim is to attempt to organize information and communication of schizophrenic user by developing and practicing information and communication strategies to deal with the digital information and its structures.

* This text is a collective contribution born from an international cooperation with Faculty of Psychology in Widya Mandala Catholic University in Surabaya in Indonesia. It was presented in the 3rd International Congress of Health Communication in Madrid (Spain) on October 19th-20th of 2017.

To check the program of the congress: http://www.aecs.es/ICHC2017_programa.pdf

– Dr. Hadi SABA AYON, Ph.D. in information and communication sciences, is an affiliated researcher to Faculty of Psychology in Widya Mandala Catholic University Surabaya in Indonesia.
Email: s.a.hadi@sabaeu.com
– Erlyn ERAWAN, Psy. D., is a researcher and lecturer in Faculty of Psychology in Widya Mandala Catholic University Surabaya in Indonesia.
Email: erlynerawan2@gmail.com
– Michael RAHARDANTO, M.A., is a researcher and lecturer in Faculty of Psychology in Widya Mandala Catholic University Surabaya in Indonesia.
Email: michaelrahardanto@gmail.com
– Jaka SANTOSA SUDAGIJONO, Masters, is psychologist, researcher and lecturer in Faculty of Psychology in Widya Mandala Catholic University Surabaya in Indonesia.
Email: jaka_s@ukwms.ac.id

Network social participation for population with psychiatric disabilities:Transliteracy, archives and memorial activities

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How can the environment affects the social participation of persons with psychiatric disability? Based on the understanding of the disability in an anthropological and systematic approach as an interactive process (Fougeyrollas, 2010), our research perspective tries to introduce the digital culture (Doueihi, 2013) in the activities of the person in order to overcome the situation of disability. The procedure consists on developing new literacies and building an inclusive/adaptative environment.

This presentation took place in the Faculty of Psychology in Catholic University of Indonesia – Atma Jaya in Jakarta on October 26th of 2016.

To check the presentation: https://drive.google.com/open?id=0B0pzbHXvgDK8SWRUNjZzSVZZTW8

 

 

 

Digital traceability and social participation of persons with disabilities: inclusive environment, archives and collaborative activities

image4The digital affects all aspects of our lives. It changes the relationship between people, by modifying the symbolic interaction and producing a traceability of persons and objects. The new digital environment is constantly changing, and offers unlimited opportunities for many communities and wider publics, allowing them to express themselves and their needs, and to build their projects. Persons with different types of disabilities find new manners of communication and new ways of carrying out their life habits.The digital, as a culture, modifies the information itself, its sharing and its usage. How can we deal with the e-information?

How can we define the social participation in the digital era? And what are the forms of digital uses which facilitate the inclusion of persons with disabilities and promote the exercise of their rights?

This lecture took place in the Faculty of Psychology in Catholic University-Widya Mandala in Surabaya City in Indonesia on september 26th of 2016. To view the presentation: https://drive.google.com/open?id=0B0pzbHXvgDK8MUtOUm9VRUNSem8

Here are some tweets of the conference:

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Digital trace, mental health & social participation

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From the interaction in the interpersonal communication to the traceability on internet: how can we comprehend the communication and the social participation in the digital era?
Can we explain digital as an environment, as a culture? And what is the relationship
between this new ecosystem and disability?
Achieve social participation (the case of population with psychiatric disabilities) in the digital environment means doing archives, memory projects and commons… to implement a digital presence.
This presentation took place in the School of Communication in the Catholic University of Indonesia-Atma Jaya in Jakarta on September 16th of 2016.It came after a meeting with Pr. Eko Widodo, dean of Faculty of Business Administration and Communication and Pr. Dorien Kartikawangi, head of the School of Communication. It was continued by a meeting with members of ASPIKOM, the Association of Communication Higher Education in Indonesia.

To view the presentation: https://drive.google.com/file/d/0B0pzbHXvgDK8bENDVUZnenFRWk0/view?usp=sharing

 

E-INCLUSION DES PERSONNES EN SITUATION DE HANDICAP PSYCHIQUE : Faire des traces numériques un environnement commun et participatif ?

LCN Enjeux du big data 2016

Issues de toute activité dialogique avec les machines connectées, les empreintes des usagers tracent le paysage du numérique, un « écosystème dynamique » (Doueihi, 2013). Les personnes vulnérables, dont celles en situation de handicap psychique, trouvent dans la Cibercultura (Rüdiger, 2011) une sortie de l’isolement vers une nouvelle sociabilité numérique. Selon le Modèle de développement humain et le Processus de production du handicap (MDH-PPH2), la situation de handicap se produit dans l’interaction entre facteurs individuels et environnementaux (Fougeyrollas, 2010). Comment le numérique, approché comme environnement, peut-il favoriser l’inclusion de la population en situation de handicap psychique ? Le profilage de l’usage numérique individuel permet aux grandes firmes de l’internet de collecter les empreintes, de leur donner un sens et conséquemment d’utiliser ces traces pour des finalités diverses. Quel serait le cas si la production et la gestion de ces traces numériques (Mille, 2013) s’orientaient vers des usages contributifs dans le but d’en faire des biens communs numériques (Le Crosnier, 2010) ? Notre article questionne les usages numériques d’un groupe de personnes en situation de handicap psychique au Havre en 2013-2014. Notre étude ethnométhodologique et notre observation de leurs activités montrent une utilisation du numérique orientée d’avantage vers le contact social et le loisir. Les membres du groupe hésitent à participer au montage d’un projet online coopératif, se méfiant de l’intrusion du numérique dans leur vie caractérisée par des troubles de comportements (Zribi, Sarfaty, 2008). Nous appelons donc à une « translittératie » (Merzeau, 2014) pour éduquer au numérique et défier les difficultés à la participation sociale de cette population. Investir les traces numériques dans des travaux collaboratifs communs pourrait ainsi constituer une voie pour la construction d’une société inclusive avec le digital.

Article publié dans le numéro de la revue Les Cahiers du Numérique “Enjeux du big data et identifications des données médicales”, sous la direction de JOËL COLLOC et BRUNO HÉNOCQUE, vol. 12, n° 1-2, en juin 2016, p. 133-169.
Title and abstract (english version)

E-INCLUSION OF PERSONS WITH PSYCHIATRIC DISABILITY: Transforming digital traces into a common and participatory environment?

Imprints of users trace the landscape of a “dynamic ecosystem” (Doueihi, 2013), derived from any dialogic activity with the connected machines, which constitutes the digital. Vulnerable persons, including those with psychiatric disability, put in the Cibercultura (Rüdiger, 2011) an end to their isolation towards a new digital sociability. According to the Human Development Model-Disability Creation Process (HDM-DCP2), the disability occurs in the interaction between individual factors and environmental factors (Fougeyrollas, 2010). But if we approach the digital as an environment, how would it promote the inclusion of the population with psychiatric disability? The profiling of the individual digital use allows large companies of the Internet to collect imprints, give them meaning and therefore use these traces for various purposes. What would occur if the production and management of these digital traces (Mille, 2013) was directed towards contributing uses, in order to make digital commons (Le Crosnier, 2010)? Our article questions the digital uses of a group of persons with psychiatric disability in Le Havre in 2013-2014. Our ethnomethodological study and our observation of their activities show a use of the digital further oriented towards social contact and entertainment. The group members’ hesitate to participate in the montage of a collaborative online project, mistrustful of the intrusion of the digital in their life characterized by behavior disorders (Zribi, Sarfaty, 2008). We call for a “transliteracy” (Merzeau, 2014) for an education about the digital and to a defiance of the difficulties for a social participation of this population. Investing digital traces in common collaborative works could be a way to build an inclusive society with digital.