lnventive traces to reinvent our participation in the new normal

This paper was presented in the 8th Annual Conference ANPOR-APCA 2020 on the second of December 2020. The Webinar is organized by the Asian Network for Public Opinion Research (ANPOR) and the
Asia-Pacific Communication Alliance (APCA) in Thailand.

Good afternoon fellow lecturers and participants,

My name is Hadi Saba Ayon, and I am a researcher in information and communication sciences from the University of Le Havre Normandie in France. My work focuses on interpersonal communication, digital culture, disability and mental health.

I am delighted to be with you today. I wish to thank Professor Jantima Kheokao, The Asian Network for Public Opinion Research and The Asia-Pacific Communication Alliance for inviting me to this event.

We question in our presentation today the meaning of participation during the Covid-19 pandemic, in a highly digitalised society, advancing with incredible speed towards a digital transformation. We also question the role that digital memories can play in making the participatory process efficient by analysing the notion of participation from different perspectives and fields.

Our world changed significantly in a matter of months. Our body language and facial expressions are harder to read and comprehend. Just as health, our interpersonal communication is another victim of this pandemic. So, what happens to participatory culture now?

Human beings cannot be defined outside of their interaction with each other and the outside world. As put by the Palo Alto school in the ’50s, one cannot NOT communicate, because our bodies send and receive information every second. George Herbert Mead and Erving Goffman who studied social interaction for the Chicago School showed that meanings derive from social interaction and are modified through definition and interpretation.

If the pandemic shows us anything new today, it is how we leave traces in every move we make.

Dominique Cardon defines the digital culture as the sum of the consequences of computing techniques on our societies, reconstituted and redesigned by traces. This said, a stand-alone trace does not have a meaning. Only when gathered with other traces and combined in a context, it can be calculated, analysed and becomes significant.

Béatrice Galinon-Mélénec, the founder of the “Human Trace” concept, sees the human being as “a producer of traces and a product of traces operating in a constant feedback loop that becomes a system”, all at once.

Put together; these theories gain tremendous importance during the current pandemic: we are surrounded today with digital inscriptions, traces of our activities on the Internet, and on related software and services. We form today an incredible collection of traces: we use the Internet to work from home. We buy online and call online transportation services. We do it all to avoid physical interaction. Our society moved from a “conversation of gestures”, to “online social scores”.

Participation as an accomplishment of life habits

In 2011, we started studying social participation in disabled persons in Le Havre – France, focusing on people with schizophrenia. This work led us to the “Human Development Model – Disability Creation Process” (HDM-DCP), a conceptual model developed by Quebec researchers in 1998, and later in 2010 and 2018. The model aims at documenting the causes and consequences of the disease, trauma, and other effects on integrity and the development of the person. According to the Quebecker model, a social participation situation refers to: “The total accomplishment of life habits, resulting from the interaction between personal (impairments, disabilities and other personal characteristics) and environmental factors (facilitators and obstacles)”.

Today, the acceleration of digital transformation caused by pandemic brings us back to the concept of calculated identity, first introduced by researchers Fanny Georges and Louise Merzeau. However, it is not easy to measure the accomplishment of daily tasks and subsequently, the level of social participation, unless we see digital as several tools where traces are left. In that sense, our activities in the digital ecosystem are not just a social score. They are a part of a digital habitat-a milieu- that we construct permanently to live in.

Milad Doueihi adds that the digital is also a humanism, in the sense that it modifies our relationship to texts, to the institutional supports built in the 19th century (university disciplines, copyright, intellectual property) and to politics in its democratic dimension because it is collaborative. His view on participatory culture is shared by Henry Jenkins (2015).

Participation as a part of shared practice and culture

According to Jenkins, a participatory culture describes “what are sometimes very ordinary aspects of our lives in the digital age. A participatory culture is one which embraces the values of diversity and democracy through every aspect of our interactions with each other – one which assumes that we are capable of making decisions, collectively and individually, and that we should have the capacity to express ourselves through a broad range of different forms and practices”.

Jenkins discusses the evaluation of our understanding of participation with the impact of digital technologies – and today, with the pandemic that affects our lives. The digital is most significant revelation of this: culture is, above all about sharing. Without sharing there can be no culture. To share is to have in common, to divide and distribute, to post, to tell, to participate.

Participation as transliteracy?

Digital gathers all types of media and allows the dynamics of back and forth between them. This is why it is considered a transmedia. Switching from one reading and writing system to another requires new skills beyond managing IT programs. They include operating forms and content of digital production and evaluation of information.

Sue Thomas defines transliteracy as “the ability to read, write and interact across a range of platforms, tools and media from signing and orality through handwriting, print, TV, radio and film, to digital social networks”. Transliteracy cannot be limited to computer-based materials and skills. It encompasses communication types across time and culture. Therefore, participation transcends the handling of technology or software and echoes the notion of “knowledge organisation” (Zacklad, 2013).

Participation for building digital memories

This dynamic between connection and sharing, participation and knowledge does not designate anything other than the very mechanism of the memory process. Memorising is always reorganising content. If memory occupies a prominent place in debates on the societal, cultural or cognitive effects of digital technology, it was only recently that the problem entered the field of information and communication sciences.

In her memory works, Louise Merzeau opposes “reinvested memory”-by individuals, social groups and communities- to a “metallic memory” described by Eni Orlandi as the memory of the machine.

Therefore, users are encouraged to build a “digital presence” by appropriating their traces, “so that the field of accessible knowledge remains an open, plural and uncertain public space”.

While exchanging information on online collaborative social networks like Twitter; on a collaborative text editor like Framapad or Framemo; users can communicate, not only on their own experience but also on the history of an event/organisation/problematic, its organisational model, the behaviours and actions of the participants, its management, its methods of communication and archiving. This work shows that public space is a space of memory, and that memory belongs to everyone.

This approach of re-appropriation has three levels:

  • The first concerns the digital competences of individuals.
  • The second is re-documentarization, which brings all the metadata needed to rebuild document sets and the traceability of its cycle. The re-appropriation of traces allows the extraction of pieces and its register in new series, making it possible to fit them into a diversity of communities, in memories built as commons.
  • The third is related to an explicit patrimonialization, in the shape of an institutional archiving of digital traces.

By focusing on what “We can do” and not just what “I can do”, participation can transit from the ability of reading and writing in the digital to the one of knowing how to program our traceability. We, therefore, must consider governance when building a digital memory.

Moving from a logic of indexing pages (Google PageRank) to a logic of indexing individuals (Facebook’s EdgeRank) and places and objects, the taxonomy of traces threatens all possibility of developing common spaces for memory and knowledge. Recreating documentary corpus open to collective contribution and memorisation, may be one of the most viable solutions to this phenomenon.

Thank you for your attention.

Biologia e cultura digital: sistemas, vírus e trabalho colaborativo

Este texto foi apresentado na 1ª Jornada Acadêmica Virtual do curso de Ciências Biológicas do Centro Universitário Uninorte, intitulada “Meio Ambiente & Cultura Digital em frente à Crise Mundial Sanitária”, em Rio Branco – Acre no Brasil em junho 2020.

Bom dia a todas, bom dia a todos,

Agradeço o convite de minha amiga estimada, a Professora Solange Maria Chalub Bandeira Teixeira, coordenadora pedagógica do Curso de Licenciatura em Ciências Biológicas no Centro Universitário Uninorte em Rio Branco-Acre. É uma honra para mim estar com vocês neste evento, a primeira feira acadêmica virtual do curso de Ciências Biológicas da Uninorte, que está acontecendo na cidade de Rio Branco, cidade amada, para compartilhar com vocês minha reflexão e ouvir as suas. Meus cumprimentos para a diretoria institucional do Centro Universitário, pelas professoras e pelos professores participantes neste evento, as professoras admiradas Janaína Almeida, Sandra Galeotti e Vera Reis, pelo professor Janeo Nascimento da Silva, amigo querido, pelos acadêmicos do sétimo período de Ciências Biológicas da Uninorte e pelos convidados.

Peço desculpa de não poder acompanhar todas as sessões por causa de fuso horário e de minhas responsabilidades familiares. Por entanto, desejo para cada uma e cada um de vocês, um webinário produtivo e uma boa saúde hoje e sempre.

Por que falamos hoje da biologia e da cultura digital? Qual é o relacionamento entre os dois? Qual é a vinculação com a pandemia de Covid-19? Como explicar este cruzamento, que eu escolhi no título de minha fala? Por que eu, que não sou biólogo, vou falar da biologia, e vocês, que não são da área da informação nem da comunicação, vão falar ou se interessar na tecnologia digital ou na cultura digital?

A minha reflexão hoje sobre a biologia e a cultura digital nesta conferência tem vários motivos. Fora do fato que eu conheci vocês, a turma da biologia, em Rio Branco-Acre em 2018 durante minha missão do ensino e da pesquisa no Brasil – e de sua presença importante e eficiente nas minhas palestras lá – a biologia e o digital têm muitas conexões. Eles enfrentam hoje, uma situação complicada imposta pela pandemia que afeta principalmente nosso organismo biológico e consequentemente nosso ambiente, nossa interação e nossa coexistência.   

Deveríamos ter falado sobre a biologia e a cultura digital desde um longo tempo, e não esperar a invasão do vírus Sars-Cov-2 em nossas sociedades e nossas vidas para pensar nisto. A pandemia nos lembra, que nós humanos, antes de seremos sujeitos digitais, usuários da tecnologia, somos animais (sociais) frágeis e vulneráveis aos ambientes onde vivemos. Ela nos alerta que não vivemos sozinhos na terra, mas com outras espécies, e que a nossa arrogância humana tem limite e tem consequências graves quando se torna exterminação, destruição e atrocidade. Ela nos lembra também de nossa animalidade fundamental, o “fundamento biológico de nossa humanidade”, como a antropóloga francesa Françoise Héritier a chamou.  

Os sistemas (pensamento sistemático)

Quando penso na biologia, a primeira coisa que me vem à cabeça é o sistema. A biologia é a ciência da vida. Ela cobre parte das ciências naturais e da história natural dos seres vivos. Ela expande-se do nível molecular, ao da célula, depois do organismo, ao nível da população e do ecossistema. Todas estas espécies são feitas de sistemas. E todas funcionam sistematicamente para dar a vida. A tecnologia digital é basicamente computacional e funciona também em sistemas. O ecossistema digital é feito de redes, de sistemas, que combinam seres humanos, objetos conectados, linguagens que permitem os usos sociais e culturais. Estes elementos interagem de modo animado para produzir uma realidade e fazer sentido. O ecossistema digital é dinâmico, como os organismos biológicos.

Urie Bronfenbrenner, psicólogo e pesquisador americano, divulga nos anos 1970-1980 sua teoria conhecida como “a ecologia do desenvolvimento humano”, segundo a qual os diferentes ambientes nos quais as pessoas participam influenciam diretamente sua mudança e seu desenvolvimento cognitivo, moral e relacional. Ele apresenta 5 níveis de sistemas que constroem o ambiente de cada organismo/indivíduo: Microsistema, Mesosistema, Exosistema, Macrosistema e Chronosistema.

Em oposição ao determinismo biológico, os interacionistas (movimento interacionista simbólico) estudaram a interação social e a construção da identidade em uma visão sistemática colocando o indivíduo no sistema dele para entender seu comportamento e seu lugar na sociedade. A comunicação, como a psicologia social, define o indivíduo em relação ao sistema onde ele está interagindo.

Em biologia, a gente fala de moléculas portadoras de informações quando nos referimos às características funcionais do DNA. Os sistemas veiculam a informação de um componente para o outro para funcionar e comunicar. Seja no interior de um sistema ou em relacionamento entre dois sistemas ou mais, é a informação que mantém a atividade do sistema ou permite a sua transformação.  

No ecossistema digital a informação é binária (digital) e se constrói em vários níveis: é uma pegada, é um rastro, é um dado, é um metadado até chegar à informação. Se torna um conhecimento quando ela faz parte de uma estrutura cientifica aprovada e adquira a habilidade para explicar e mudar fenômenos e situações. Segundo Louise Merzeau, Professora e pesquisadora francesa, que tem trabalhos relevantes sobre a mediologia, a memória, a cultura e os rastros digitais, a informação e o processamento de dados digitais nos envolvem hoje. São muitos objetos conectados que nos cercam, e outros que vão ser conectados com informação, com dados, com cálculo, sendo necessário avançar para um pensamento ambiental, ecológico para pensar e entender a cultura digital. Este processamento me faz pensar de novo na biologia. A informação que circula dentro dos sistemas biológicos (humanos, animais, naturais etc.) não é somente uma entidade para comunicar, mas também para preparar ou permitir a mutação e a evolução do organismo no ambiente dele. Sem se colocar na posição do biologismo ou mesmo de fatalismo, os trabalhos de Charles Darwin e Alfred Russel Wallace, sobre a Teoria da Evolução, mostram que a luta pela existência se refere às diferentes habilidades dos indivíduos para sobreviver e as adaptações são sempre relacionadas a um ambiente em mudança. Os dois antropólogos e biólogos britânicos admitem que, na maioria dos casos, órgãos e instintos exibem variações infinitesimais que influenciam o vigor dos organismos e sua “chance de sobrevivência”. Eles deduzem que há uma tendência para as espécies formarem novas variedades indefinidamente e as perpetuarem. A seleção natural, como eu entendo, se refere à interação entre a espécie e o ambiente, mas ultrapassa a consciência e o controle do organismo para administrar e gerir suas condições. E para dizer que a força e a aptidão do dinamismo da mutação e da evolução agem em sistemas onde o indivíduo, como organismo biológico, pode influenciar e ser influenciado pelos outros componentes (biológicos, naturais, políticos, educacionais, sociais, artefatos etc.). Eu exponho este detalhamento sobre a “seleção natural” para pensar o “humanismo digital”[1] em sua “mutação antropológica” que nos leva a repensar o que é o humano[2] na era digital e pandêmica. A relação com a informação digital nos mostra que quem constrói no ambiente digital não é só o humano usuário, mas há logicas técnicas autônomas inteligentes que produzem conosco nossos rastros, que os tratam, que os analisam e que abrem ou fecham caminhos e oportunidades. Esta inteligência artificial precisa ser questionada pelos cientistas para não perder o controle sobre a nossa sobrevivência. Voltando a pandemia neste contexto, ela nos mostra o caráter primordial da informação para resistir e sobreviver. A informação científica certa em oposição à informação fake ou errônea. O historiador Yuval Noah Harari[3] diz em uma entrevista recente com a BBC[4], que a informação é o combustível virtual para tudo o que fazemos nos níveis nacional e local. Esta pandemia exige uma cooperação internacional. Eu adiciono, ela precisa também dos biólogos para ajustar, confirmar e orientar.

Vírus e trabalho colaborativo

O vírus Sars-Cov-2 apareceu brutalmente em nossas sociedades. O vírus colocou a nossa civilização e a nossa existência em perigo. Este vírus é novo, mas o vírus como entidade, existia antes de nossa existência humana. A idade dele talvez volte para a idade da vida na terra.

A palavra “vírus” designa uma partícula microscópica, um agente infeccioso que só pode se espalhar se encontrar um hospedeiro[5]. Alguns vírus infectam humanos, outros infectam animais e outros infectam plantas. Mas nem todos eles causam doenças[6]. Hoje a humanidade está preocupada com a desaceleração da circulação de novo coronavírus e está investindo e se focando na produção da vacina. Mas por que não pensamos na origem deste vírus? De onde vem? Quais são os erros que permitiram a sua transmissão? Didier Sicard, especialista em doenças infecciosas na Franca, fala da indiferença no ponto de partida desta pandemia. “Como se a sociedade estivesse interessada apenas no ponto de chegada: a vacina, os tratamentos, a reanimação. Para que não recomeça deve-se considerar que o ponto de partida é vital”, ele diz. Esta missão precisa um trabalho colaborativo pluridisciplinar e internacional. Isso não é novo para os biólogos, onde colaboração e a coletivismo fazem parte de seus hábitos e atitudes. O trabalho colaborativo é também um atributo da cultura participativa, onde os mais experientes transmitem seus conhecimentos aos novatos. A cultura digital é fundamentalmente colaborativa. Ela se torna participativa quando se refere à construção da memória digital, para permitir o armazenamento de rastros, seus compartilhamentos em qualquer contexto técnico e temporal para fins uteis, e finalmente para combater o esquecimento. É neste sentido que o digital se torna terra de projetos colaborativos, onde os biólogos têm que achar seus lugares. Alguns já fizeram. Tem um projeto que chamou minha atenção, que se chama “Bio Num” ou “Unidade de Ensino de Cultura Biológica Digital”[7] feito pelos estudantes de licenciatura em Ciências Biológicas na Universidade Paris Diderot na França. O objetivo geral é ensinar de maneira diferente na universidade: ensinar, em qualquer nível, é entender mais profundamente o conhecimento transmitido. Em outras palavras, o projeto, que é um website com um blog, é feito para transmitir conhecimento biológico para todos. Os artigos têm conteúdo biológico diversificado que trata temas e problemas da área para o grande público. O trabalho incita os professores e os estudantes a colaborar e escrever e transmitir a biologia diferentemente. A pandemia hoje empurra vocês, biólogos, a inventar seus cotidianos para transformar o nosso, e achar novos caminhos para manter nossa coabitação com a natureza. Quem conhece a natureza e seus fenômenos mais de que vocês?

Por que a biologia e a cultura digital no título de minha palestra? Talvez, eu digo, é para pensar no papel da biologia e dos biólogos na era digital, para produzir, divulgar e arquivar uma informação científica e de referência para todos. Esta missão, esta informação, pode constituir o nosso meio para lutar em tempos de epidemias e de pandemias, mas também pode achar a nossa orientação na era pós-pandemia.

Muito obrigado pela sua atenção.   

[1] Noção proposta pelo historiador das religiões americano Milad Doueihi.

Doueihi M. (2011). Um humanisme numérique. Communication & Langages, vol. 1, n° 167, p. 3-15.

[2] Vitali-Rosati M. (2020). Pourquoi on ne peut plus être humaniste, Culture numérique, https://blog.sens-public.org/marcellovitalirosati/pourquoi-on-ne-peut-plus-etre-humaniste/

[3] BBC Hardtalk (2020). Coronavirus: Yuval Noah Harari, philosopher and historian, on the legacy of Covid-19, https://www.youtube.com/watch?v=gfVrin7Ybp8

[4] British Broadcasting Corporation

[5] Schlegel T. (2020). Didier Sicard : Il est urgent d’enquêter sur l’origine animale de l’épidémie de Covid-19, France Culture, https://www.franceculture.fr/sciences/didier-sicard-il-est-urgent-denqueter-sur-lorigine-animale-de-lepidemie-de-covid-19

[6] Idem.

[7] Bio Num, https://bionum.univ-paris-diderot.fr/

Fighting the diktat of a pandemic through a fair digital environment

Fighting the diktat of a pandemic through a fair digital environment

This text, written by Doctor Hadi Saba Ayon, is the translation from French of his intervention in the web chat “The invisibility of people with disabilities in the context of Covid-19”, organized by the International Network on disability production process (RIPPH), April 29, 2020.

Could digital culture save us in the times of pandemic – and later on- in the post-pandemic era? How do we grasp our individual and collective actions in this “place of links” (Merzeau, 2013) with its inscribed traceability in a computational dimension?

Once again, we find ourselves face to face with digital technology, questioning its capacity to provide answers to our uncertainties. Could it be a “new civilizing process” (Doueihi, 2018)? Furthermore, has SARS- CoV-2 triggered a process of “uncivilization”? Do the thousands of deaths around the world[1]; the hundreds of testimonies of families and organisations on abandoned disabled and vulnerable loved ones and the heartbreaking stories of triage of patients[2] recreate a “humiliation processes” (Smith, 2001) against the most vulnerable, in particular those suffering from disabilities?

Digital culture and essential animality

Seduced by the promises of technology of a better future, we were taken aback by the digital. Historian Milad Doueihi described this fascination as “a new civilising process”, borrowing the term from the German sociologist Norbert Elias. The latter defined ” Civilising Process” as a correspondence between the historical process of seizing power by a centralised state on the one hand, and the self-control exercised by individuals over their spontaneous violence, their instincts and their affects- on the other.

Elias described humans (from European societies) of the twentieth century as “late barbarians”. The last were described by Doueihi as being “modern savages” submitted to a “digital humanism”, or:

“The result of converging complex cultural heritage with a technique that has become a place of unprecedented sociability”.

As far as Doueihi is concerned, digital technology defines as:

“A culture in the sense that it sets up a new global context, and because digital – despite a strong technical component we must always question and constantly monitor because it is the agent of an economic will – has become a civilisation distinguished by its ability to alter our vision of objects, relationships and values. The new perspectives that characterise it introduce into the field of human activity”. 

All of a sudden, SARS-CoV-2 invades our world and sends us back to our fundamental animality. Stéphane Audoin-Rouzeau, a WWI historian, writes:

“We remain homo-sapiens belonging to the animal world, vulnerable to diseases against which our fighting capacities remain rustic given our supposed technological power”.

Against this backdrop, could we be facing a process of “uncivilization” triggered by SARS-CoV-2? What is likely to cause such an upheaval? Can we find answers “on the side of lowering the calculability of social risks, increasing dangers, increasing uncertainties, which can occur in times of social crisis”, epidemic or pandemic? It is difficult for us to answer this just yet. 

Overwhelmed by their physical or functional differences throughout their life, a disabled person finds themself in the digital environment, in times of a pandemic, on equal terms with Internet users. The body is at the heart of social interaction: we live, and we build ourselves through our body. However, at present, this social (physical) interaction – is severely limited – because of Covid-19. Bodies become suspicious in public and even private spaces. They are inspected, evaluated, often sidelined, abandoned, sometimes even ousted. Sars-Cov-2, like AIDS, disrupts the relationship with others, dims the practices that build trust, and reinforces the constraints towards the contaminating agent. For anthropologist Françoise Héritier, the solutions found by humanity for illnesses like AIDS emerged from restraint rather than the need to convince.     

Such a conclusion may seem despairing because the underlying constraints are biased. However, our experience with incurable infectious diseases, shows that the societies tend to protect themselves by fleeing, or even by sidelining, abandoning, expelling or killing the contaminating agent.

The body of the disabled person, already a source of social stigma, suddenly becomes equal to other bodies. What matters (alarms) is the presence of another, at a distance far enough to be perceived as reassuring (less than 1 meter). Thus, all bodies become equal in their vulnerability to fear, sickness, and death.

During the current crisis, the digital is providing our community with leeway, thus enabling us to function. Whether it is to inform, communicate, telecommute, study, shop, or manage administrative work: more than ever, the digital proves to be an environment for social processes. Due to physical distancing, individuals are forced in their interactions to abandon or reduce their face-to-face relationships when faced with the risk of becoming infected or infecting others. The body becomes suspicious. By isolating it from the public space, we deprive it of its symbolic social interaction (as defined by George Herbert Mead), since symbolic interaction initiates a process of interpretation and definition by which some establish the meanings of the actions of others and redefine their actions.

In digital environments, all interaction produces traces, mostly involuntary ones. The latter avoid all utterance and produce information on our behaviour. According to Louise Merzeau (2013), traces resist interpretations of semiology because they stem from another logic. Everything they carry is the product of processing: “computer processing of instructions, algorithmic processing of data, economic and strategic processing of databases of intentions”. Today digital businesses tend to impose marketing logic through the model of personal branding, profiling and e-reputation. “Opposing a publication function to this advertising acceptance of traces represents a major political and cultural issue” (Merzeau, 2013).

Let us keep in mind that the Internet is an opportunity for democracy, thanks to the egalitarian foundations that presided over its birth and development (Cardon, 2010). However, user communities still struggle with access, accessibility and reappropriation of traces. How could disabled people, consequently, organise their digital habitat while guaranteeing full social participation? 

Equipment, access, accessibility 

The Convention on the Rights of Persons with Disabilities (UN, 2006) recognises:

“The importance of accessibility to the physical, social, economic and cultural environment, to health and education and to information and communication, in enabling persons with disabilities to fully enjoy all human rights and fundamental freedoms”.

The access is therefore an essential condition for the exercise of human rights.

By positioning the notion of access in the conceptual domain of the environment to measure its impact on social participation, Patrick Fougeyrollas and his fellows (2015), Patrick Fougeyrollas and his colleagues (2015) presented access as the intersection between six dimensions and components of the environment. The dimensions are as follows: availability; accessibility; acceptability; affordability; usability, and adaptability. So the issue is not reduced to access to the IT tool, the network provider and wired or wireless access. We are facing a phase requiring digital literacy, learning and expertise, imperative to the use of technology and the administration of content.

Many studies showcase limited access to digital technology faced by diverse populations, including disabled people.  One recent study called Perspectives of Young Adults on Receiving Telepsychiatry Services in an Urban Early Intervention Program for First-Episode Psychosis: A Cross-Sectional, Descriptive Survey Study, published on March 2020 by a group of Canadian researchers (Montréal). The study shows the existing of limited knowledge on telepsychiatry in specialized services for first-episode psychosis (FEP), “despite its potential for improving service access and engagement”.

It points out that more than half of the participants (59%) “rarely or never used mainstream video chat (e.g., Facetime)”. The study showed that “despite experiencing obstacles to attending appointments and expressing receptivity towards telepsychiatry, participants did not have access to these services. It is important to provide education to clinicians on the potential of telepsychiatry to improve service access”.

In the era where digital technology affects personal and environmental factors and everyone’s life habits, the full social participation of disabled people should question usage rather than access. What can we do with and in digital so that our presence is not limited to one or more identities exploited by trackers (governments, companies, individuals, and others)? We are facing a socio-technical ecosystem where the user is the centre and the brain. It is therefore essential, for the disabled person as well as for any other person, to create methods and find ways to develop social links, self-esteem, control of one’s life and time, quality of life, and to build online communities. How to think digital traces in an approach that no longer refers to an identity but to an ability to manage communication?

The “Digital divide” concept implies that inclusion is the answer. The web was initially designed to work for everyone, regardless of hardware, software, language, location or ability. It means that the web should be accessible to people with various range of hearing, movement, sight and cognitive abilities..

According to the World Wide Web Consortium (W3C):

“When websites and web tools are properly designed and coded, people with disabilities can use them”.

More specifically, people can: perceive, understand, navigate and interact with the web and contribute to it. Access to devices and the Internet, the adaptation of the workplace are not enough to accomplish network social participation. Digital is not just a technical and economic issue but contributes to the construction of a social project.

Putting their physical or functional differences aside, a disabled person can get involved in collaborative production projects to meet their (individual and collective) needs. According to Serge Proux (2014), this (collaborative) “form of contribution” refers us to a universe of modest, horizontal exchange relations between peers where contributors are engaged in:

“A universe of commonly shared normative expectations. There are shared values between contributors like freedom of expression, the logic of giving, the need for cooperation”.

Co-build memories

How to operate actively in the knowledge society? How to bring out a new “living together”? The current pandemic reminds us that we are drowning in information. The latter is everywhere, reliable and fake, archived and poorly documented, multimedia. If accessing it is easy, the process of using and turning it into knowledge is not a given. Digital has turned the concept of reception upside down. The diagram transmitter-receiver (known in Information Science) no longer applies to networked information, at least on the Internet user. The latter is no more than a receiver of information (as was the case with mass media), but he produces it, he seeks it, shares it, creates networks, participates in conversations and builds communities.

Today, we are interested in two logics among others in digital uses in a pandemic period: the first is passive, receives/consumes information, likes and shares it (especially on social networks and chat applications). The second, meanwhile, produces / co-develops information, stores it and shares it (on web pages, collaborative writing platforms, blogs.). The transition from receiving information to producing and sharing it requires thinking digital not only as a medium but also as an environment to be lived in and improved. This, in turn, calls for the development of digital skills but above all a vision of an appropriation of digital traces in “intelligent” environments, which can be used to train us, to find and understand information and to analyse situations or processes. The emerging post-pandemic world begs us to exchange, write and memorise collectively. It is in this way that disabled people, as well as all other people, appropriate their digital traces in architectural structures that allow reading and writing attached to the moment, but also extracted from other temporalities.

The building or co-building an “intelligent” digital environment means developing a digital memory, which can increase individual and collective power and above all, action on the environment to transform it when necessary.


[1] Check the article of Jérôme Val in France Inter « Coronavirus : a-t-on oublié les foyers de handicapés ? », published on 15 April 2020, https://www.franceinter.fr/coronavirus-a-t-on-oublie-les-foyers-d-handicapes.

Check « L’alerte de 48 associations sur le sort des personnes handicapées, ‘oubliées de la pandémie’ de coronavirus », published on 04 April 2020, https://www.lejdd.fr/Societe/lalerte-de-48-associations-sur-le-sort-des-personnes-handicapees-oubliees-de-la-pandemie-de-coronavirus-3959794

Check the article of Emely Lefrançois in La presse « Personnes en situation de handicap : les milieux de vie dont on ne parle pas », published on 20 April 2020, https://www.lapresse.ca/debats/opinions/202004/19/01-5270046-personnes-en-situation-de-handicap-les-milieux-de-vie-dont-on-ne-parle-pas.php

Check the article of Autistics for Autistics Ontario intitulé “Intellectually disabled Canadians are dying in residential institutions: What’s happening & what can be done”, published on 17 April 2020, https://a4aontario.com/2020/04/17/intellectually-disabled-canadians-are-dying-in-residential-institutions-whats-happening-what-can-be-done/

[2] Check the article of Vincent Olivier in L’Express « Covid 19 : va-t-on « sacrifier » des malades en réanimation ? », published on 12 March 2020, https://blogs.lexpress.fr/le-boulot-recto-verso/2020/03/12/covid-19-va-t-on-sacrifier-des-malades-en-reanimation/

Check the article of Eric Jozsef in Libération « Covid-19 : la sélection des malades divise le corps médical italien », published on 19 March 2020, https://www.liberation.fr/planete/2020/03/19/la-selection-des-malades-divise-le-corps-medical-italien_1782400


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