visibilising pain: visual narratives of illness and transmedia storytelling

Acronym: VISIBILIZANDOLO
Reference: RTI2018-098181-A-I00
PI: REBECA PARDO
Funded by: MCIN/ AEI/10.13039/501100011033/ and FEDER “A way to make Europe” 2018 call for R&D&i projects in the area of “Research Challenges”
Length: 2019-2022

The emergence of the internet, social networks, applications like WhatsApp, and other technologies have transformed how we relate to one another in society, present ourselves to other people, and engage in communication. The metamorphosis of the communication media has led to a fundamental change in the figure of the spectator/recipient/user, who now takes on an active role in the emerging new context, even to the extent of being able to engage publicly in self-representation. This element is especially important among a particular swath of the population, namely patients, their family members and carers, and those who engage directly with them, specifically doctors, nurses, pharmacists, advertising agencies and the communication media.

Before the emergence of the internet, public images of certain illnesses (and the people affected by them) were produced exclusively by doctors interested in the most dramatic cases and by journalists who basically only talked about them when they were linked to news and current events. This fact seems to lie behind the appearance of a number of stigmatising and dehumanising iconographies that are especially troubling in cases, for example, of mental illness and AIDS. As a result, the access of patients, family members and carers to the internet appears to have led to a shift not only in the way that they represent themselves, but also in social perceptions and, even more importantly for the project in question, in how they are visually represented in the public sphere by the communication media, institutions, film, TV series, the art world and/or advertising agencies. Against this backdrop, it proves interesting to analyse the new narratives of illness not only through their visual and photographic portrayals (Marzal, 2015), but also by taking account of the contributions of contemporary transmedia storytelling.

The pertinent bibliography is still very limited, but manuals have now begun to appear. For example, FEAFES (2008) has brought out guidelines on how to write properly in the area of health communication and how to distinguish the person from the illness (e.g. it is no longer right to speak of a “schizophrenic”, but rather of a “person living with schizophrenia”). Documents of this sort may still be in their early stages, but they nudge us towards small changes in how we tell their stories, helping to transform society’s perception of illness and everyone who is affected by it.

This project sets out to undertake a study of the public images of illness and the stories that have been shaping the social and culture image of such groups. The aim is to analyse the evolution of their stigmatisation or socialisation (depending on the case in question), as well as the potential influence of “exogenous” factors (e.g. historical, advertising, philosophical and even gender-related issues) in the changes that can be observed.

The purpose is not only to carry out an in-depth analysis of visual narratives and their essential elements in the broader historical, media and cultural context, but also to put forward a proposal or bring out a handbook to offer guidance so that the visual representation of these groups is more ethical and closely connected to the reality of all the individuals who are members of the groups in question.