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.

Ends.


[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


References

– Cardon D. (2010). La Démocratie Internet, Promesses et limites, Seuil, Paris.
– Doueihi M. (2018). Le numérique, un nouveau processus civilisateur. Le Monde, 24 janvier 2018, https://www.lemonde.fr/idees/article/2018/01/24/le-numerique-un-nouveau-processus-civilisateur_5246335_3232.html
– Doueihi M. (2011). Pour un humanisme numérique, Seuil, Paris.
– Fougeyrollas P., Boucher N., Fiset D., Grenier Y., Noreau L., Philibert M., Gascon H., Morales E., Charrier F. (2015). Handicap, environnement, participation sociale et droits humains : du concept d’accès à sa mesure. Revue Développement humain et changement social, avril 2015, p. 5-28.
– Lal Sh., Abdel-Baki A., Sujanani S., Bourbeau F., Sahed I., Whitehead J. (2020). Perspectives of Young Adults on Receiving Telepsychiatry Services in an Urban Early Intervention Program for First-Episode Psychosis: A Cross-Sectional, Descriptive Survey Study. Frontiers Psychiatry, 11:117, doi: 10.3389/fpsyt.2020.00117
– Lepalec A., Luxereau A., Marzouk Y. (1997). Entretien avec Françoise Héritier. Journal des anthropologues, n° 68-69, p. 21-33.
– Merzeau L. (2013). L’intelligence des traces. Intellectica, vol. 1, n° 59, p. 115-135.
– Newton T. (2008). (Norbert) Elias and Organization: Preface. Organization, 8(3), p. 459-465.
– Paillé S. (2017). La sociologie de Norbert Elias et « l’effondrement de la civilisation » en Allemagne. Cycles Sociologiques, vol. 1, n° 1, https://cycles-sociologiques.com/publications__trashed/sabrina-paille-la-sociologie-de-norbert-elias-et-leffondrement-de-la-civilisation-en-allemagne/
– Proulx S. (2014). Enjeux et paradoxes d’une économie de la contribution, dans La contribution en ligne : pratiques participatives à l’ère du capitalisme informationnel, Presse de l’Université du Québec, Québec.
– Smith D. (2001). Organizations and Humiliation: Looking beyond Elias. Organization, vol. 8, n° 3, p. 537-560.

Apropriar-se os rastros digitais em um design coletivo-UnB, Brasília 2018

Como transformar a rastreabilidade digital em um ato memorial através de projetos individuais e coletivos (arte, escrita, documentação, etc.)? Como entender a ultrapassagem da interação social (George Mead e o interacionismo simbólico) ao rastro digital (Escola Francesa sobre o rastro)?

Sylvia F.3

Sylvia Fredriksson (de Paris) falando dos comuns digitais. Fonte: sabáeu

A disciplina “Da construção identitária à construção da memória” no Departamento de Design na UnB-Brasília (novembro 2018), administrada pelo Dr. Hadi Saba Ayon (CDHET, Université Le Havre Normandie França, e outras afiliações internacionais), questionou a cultura digital e suas mutações sociais e culturais.

As participantes interrogaram a informação, a comunicação, o design e a memória na erá digital. Elas construíram um projeto coletivo “Design da visibilidade” na forma de website, com três eixos que convergem com as pesquisas (mestrado em Design) delas: Cidade, Comunidade e Identidade.

Site designdavisibilidade

Designdavisibilidade.wordpress.com

A conversa com Sylvia Fredriksson, pesquisadora e designer Francesa, organizada em um webinário sobre a cultura digital e os comuns, trouxe novas reflexões sobre o “terceiro-lugar’, os “comuns digitais”, o “software-livre” etc. Ela girou novas pistas para desenvolver as pesquisas e pensar em cooperação internacional.

Se a interação social é simbólica na medida em que envolve um processo de interpretação – pelo qual alguns estabelecem o significado das ações e observações de outros – e de definição – pelo qual lhes comunicam, em retorno, indicações do que eles preparam-se para fazer, a interação digital é diferente. Os rastros digitais não são símbolos/significados como os outros. Porque eles são destacáveis, mobilizáveis, e calculáveis. Eles não são mensagens e não tem código de interpretação. O que vai torná-los significativos, mas especialmente eficazes, é sua combinação e seu processamento algorítmico.

Escola Francesa 1

Todas nossas atividades no digital deixam rastros. Esta rastreabilidade não faz memória. É uma memória maquínica (anti-memória) que precisa de organização. O trabalho memorial permite reunir o que foi espalhado ou desmembrado. No ambiente digital, a agregação [montagem] de memórias não é mais pensada em termos de deposição, mas de fluxo, relacionando a aquisição, a visibilidade e a reativação de rastros.

A ultrapassagem da tecnologia computacional para usos culturais desenhados no ambiente digital, ou de “computação” para “digital” (Doueihi, 2011), mudou a construção da sociabilidade e dos espaços que habitamos. Para ter uma presença (no digital), precisamos educar-se ao digital; aprender a re-documentarizar nossos rastros; arquivá-los a fim de produzir e compartilhar conhecimento comum. Mais do que uma auto-imagem, a cultura digital é baseada em um sistema conversacional alimentado por um processamento algorítmico de metadados: uma lógica dual de documentação e relacionamento.

Video de Louise Merzeau: Collège des Bernardins (2016). Vimeo.

No ambiente digital, preservar não significa fixar, mas duplicar, circular e reciclar. Porque o conteúdo é instável, ele deve ser dobrado por uma informação sobre a informação: o metadado. Associado a toda mensagem, o metadado não apenas descreve os enunciados, ele permite a segmentação, a distribuição e a recomposição.

Mais de que restringir ou proteger seus dados, o usuário tem interesse em fazer um rastreamento, ou seja, inserir seus rastros digitais em uma comunidade, contexto e temporalidade.

O hashtag #memorastrodigital que os participantes fizeram no Twitter permitiu uma redação coletiva com muitas observações e matérias sobre a apresentação e o debate. Para consultar o arquivo das observações do webinário, pode acessar neste link:

https://twitter.com/hashtag/memorastrodigital?src=hash

Pensamos a concepção de ambientes de informação como processos “que permitem uma interação entre Informática onipresente e design de serviço, onde o arquiteto da informação considera a coleção, a organização e a apresentação da informação como tarefas semelhantes às do arquiteto confrontado com o projeto de um edifício, [um e outro trabalhando] em espaços de design para existir, viver, trabalhar, brincar “(Resmini e Rosati, 2012).

arquitetura da info 1

Com agradecimentos e vontade para continuar os debates sobre os usos, as condições e os desafios da cultura digital, terminamos o nosso webinário e acabamos o nosso curso. Até o próximo encontro, deixamos uma memória coletiva no www.designdavisibilidade.wordpress.com e outros fragmentos documentares/de design em vários lugares praticados, documentados e re-documentados.

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L’accompagnement des personnes ayant des incapacités psychiques en Indonésie : réagencer les traces numériques dans du storytelling et de l’archivage

IMG-7168

Alter 2018 Conference, Lille-France.

Comment rendre le numérique inclusif pour favoriser la pleine participation sociale des personnes ayant des incapacités psychiques ? Quel rôle pourrait-il jouer dans l’accompagnement ? On parle de l’incapacité psychique quand se manifeste chez une personne un dysfonctionnement de la personnalité caractérisé par des perturbations du comportement et de l’adaptation sociale (Zribi, Sarfati, 2008). La désorganisation marque la vie de cette personne quand l’incapacité interfère avec une série de compétences de bases. Les traces produites dans l’environnement numérique de déplacement, de parcours, d’aménagement et d’habitat (Merzeau, 2013), témoignent d’une nouvelle « habitude de vie » : l’éditorialisation. Cette dernière désigne l’ensemble des appareils techniques, des structures et des pratiques qui permettent la production et l’organisation d’un contenu sur le web. Dans une approche méthodologique qualitative, nous interviewons un groupe d’accompagnateurs dans un hôpital psychiatrique à Lawang en Indonésie sur la place du numérique dans la participation sociale. Le recueil de données s’est appuyé sur des entretiens semi-directifs et une observation participante. Le personnel interviewé souligne l’importance d’intégrer le numérique dans des activités d’accompagnement. Ses propositions se focalisent sur l’éducation au numérique, l’accès à l’information, les outils expressifs et les réseaux sociaux numériques. Nous proposons l’archivage numérique comme stratégie à deux objectifs : la réorganisation de la communication vis-à-vis de l’embrouillement du sujet, et l’élaboration du mémoire contre la mémoire « machinique » d’Internet (Merzeau, 2011). L’archivage numérique englobe toute pratique de sélection, d’annotation, de classement, d’indexation dans l’échange et le partage. Pour cette finalité nous suggérons l’usage de deux plateformes : WordPress et Storybird pour la production et le partage de contenus liées aux besoins et intérêts des personnes ayant des incapacités psychiques, à leurs droits et à leur accompagnement. Ainsi, le storytelling bien architecturé, organisé et archivé devient une réponse au désordre informationnel et mémoriel.

Accompanying people with psychiatric disabilities in Indonesia:
Rearranging digital traces in storytelling and archiving

 How can we make digital inclusive to promote a full social participation of people with psychiatric disabilities? What role could it play in accompaniment? Psychiatric disability designates personality dysfunction characterized by behavior and social adjustment perturbations (Zribi, Sarfati, 2008). The person suffers from organizational disruption when disability interferes with a variety of basic skills. In the digital environment, the least activity produces traces. Traces of navigation, of traveling, of planning and of housing (Merzeau, 2013) witness of a new life habit: the editorialization. This process designates all technical devices, structures and practices that allow the production and organization of content on the web (Vitali-Rosati, 2016). In a qualitative methodological approach, we interview a group of accompanists of schizophrenics in a psychiatric hospital in Lawang in Indonesia on the place of digital in social participation. The data collection was based on semi-structured interviews and participant observation. The staff interviewed emphasized the importance of integrating digital into accompaniment activities. His proposals focus on digital education, access to information, expressive tools and digital social networks. We propose digital archiving as a strategy with two objectives: the reorganization of the communication against the disorder of the subject, and the development of the memory against the “auto-memory” of the Internet (Merzeau, 2011). Digital archiving covers all practices of selecting, annotating, ranking and indexing in exchange and sharing. For this purpose we suggest the use of two platforms: WordPress and Storybird for the production and sharing of content related to the needs and interests of people with psychiatric disabilities, their rights and to their accompaniment. Thus, the well-organized and archived storytelling becomes an answer to informational and memorial disorders.

Cette présentation a eu lieu dans la 7ème Conférence annuelle d’Alter à l’Université Catholique à Lille (France) le 05 juillet 2018.

Pour consulter la présentation/To check the presentation : https://drive.google.com/open?id=1bNy1X_OIIePsQhmVkqflbkFYicr99aBC