Introduction to the online short course Disability: Communication and Social participation, in Universitas Katolik Indonesia Atma-Jaya

This short online course entitled "Disability: Communication and Social participation" is delivered by Dr. Hadi Saba Ayon, at the School of Communication at Catholic University of Indonesia Atma Jaya in Jakarta. It is divided into 3 sessions/2 hours; on 22, 27, 29 of July of 2021, 15:00 - 17:00 Jakarta Time.

Good afternoon fellows and participants, and welcome to my second course on disability. I am very glad to see you in my virtual class to discuss and exchange our experiences.

Today we talk about disability and its information and communication questions: How can we understand disability situation using information and communication theories? How to deal with it in the Covid-19 pandemic context? How to define social participation for disabled people in a networked era?

In this course, we conceive disability as a variation of human development (Fougeyrollas et al., 1998, 2010, 2018); in another words, it is a difference in the level of achievement of life habits or the exercise of human rights. We approach it from a communication angle, that of constructivism, to understand the individual-environment relationship; and that of symbolic interactionism, to apprehend the individual-society relationship analyzing the social interaction and defining its context.

We talk about disability as a situation of dysfunction in the communication, defined by Gregory Bateson and Jurgen Ruesch (1951) as processes by which subjects influence each other. We approach digital culture and changes that it brought and that affect our whole society and our way of thinking and acting.

We talk about disability in exceptional times: Covid-19 pandemic. It drives us to question policies and forms of interaction concerning disabled people.

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

Has SARS- CoV-2 triggered a process of “uncivilization”? Do the thousands of deaths around the world; the hundreds of testimonies of families and organizations on abandoned disabled and vulnerable loved ones and the heartbreaking stories of triage of patients recreate a “humiliation processes” (Smith, 2001) against the most vulnerable, in particular those with disabilities?

Overwhelmed by their physical or functional differences throughout their life, disabled persons find themselves 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.

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.

In the era where digital technology affects personal and environmental factors and everyone’s life habits, can we think the full social participation of disabled people in relation to the access? To the usage? 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)?

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

“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.

We are facing a socio-technical ecosystem where the user is the center 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?

How to operate actively in the knowledge society? How to bring out a new “living together”?

Despite the progress made in recent years, people with disabilities still face obstacles in accessing healthcare, education, employment, recreational activities or participation in political life, and also present a risk of increased poverty and social exclusion.

The World Health Organization (WHO) published last year a guidance on basic protection measures for disabled people during the COVID-19 outbreak. It calls for actions needed to be taken to ensure that people with disability can always access the health-care services, water and sanitation services and public health information they require.

It includes considerations for actors: to reduce the potential exposure to Covid-19; to put a plan in place to ensure continuation of the care and support the person needs; to prepare household for the instance the person should contract Covid-19; and to ensure that all members of the household and caregivers enact the basic protection measures.

The WHO calls also governments for actions, to ensure public health information and communication is accessible; to undertake targeted measures for people with disability and their support networks; to undertake targeted measures for disability service providers in the community; to increase attention given to this population living in potentially high-risk settings of developing the disease; and to ensure that emergency measures include the needs of disabled persons.

It urges to ensure that Covid-19 health care is Accessible, Affordable and Inclusive; to deliver telehealth ; to develop and implement service continuity plans; to communicate frequently with disabled people and their support networks; to reduce potential exposure to Covid-19 during provision of disability services in the community; and to provide sufficient support for disabled people who have complex needs.

And finally, it calls for actions in institutions to reduce potential exposure to Covid-19; to prepare for Covid-19 infections in institutions; to provide sufficient support for residents with disability and to guarantee the rights for residents during the Covid-19 outbreak.

On the side of civil society, organizations defending the rights of disabled people criticized governments for not acting in favor of people with disability. For example, the League of Rights and Freedoms in Quebec in Canada, underlines in a text entitled “Defend the right to participation, crisis or not” published in a special issue of its review “Rights and Handicap” (2021), that the crisis produced by the Covid -19 was marked by a deficit of democratic mechanisms for participation and consultation of the population (in Quebec). She recalled the importance of citizen participation – especially during a pandemic – stressing the idea that action and democracy are not mutually exclusive, but complementary.

Ursula von der Leyen, President of the European Commission, called in March of this year (2021), to remove the remaining barriers for disabled people by defining flagship initiatives focused on three main themes: their rights; their independent life and autonomy and; finally, equal opportunities and non-discrimination. “We all have the right to a life without barriers. And it is our duty, as a society, to ensure the full participation of all on the basis of equality with others”, she said.

Finally, we remember that effective participation must have a significant impact on decisions, especially with regard to the most marginalized and vulnerable populations. The right to participation presupposes taking part in the public decision-making process and, consequently, having the assurance of being considered in the design, planning and implementation of policies or services that must guarantee respect for its rights.

Mental health and social participation, online short courses in Universitas Katolik Indonesia Atma-Jaya

What does participation mean during the COVID-19 pandemic and how can we think the social participation process in relation to the measures assessed?

How can we protect our mental health and invent our social participation in a society digitalized more than ever and advancing with incredible speed towards digital transformation?

What about disabled people? How to promote their inclusion and social participation in this context?

Topics to be discussed in theses short courses.

School of Communication – Online Short Courses – Unika Atma Jaya

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.