Abstract: For those affected, chronic illness is a frightening, often isolating experience. Part of its power lies in its
invisibility: to the onlooker, the chronically ill often appears “normal”. In addition, with the passing of time
the absence of an immediate threat to life can lead the observer – medical professional or otherwise – to
misjudge the true impact of the condition on the sufferer.
This paper draws on an original corpus of interviews with six Italian women living with Rheumatoid
Arthritis and Lupus. It is qualitative in nature and is informed by insights gained from Discourse Analysis,
Narrative Analysis, and functional approaches to language.
It will show how patients construe and present their experience of chronic illness, whilst shaping a new
sense of self. In particular, the paper will highlight the often neglected impact of aggressive
pharmacological therapies on sufferers. It will become apparent that for the patient undergoing such
therapies, it is often the treatment, rather than the disease, which is construed as having the worst
impact on quality of life. As my informants clearly indicate, a better appreciation of this fact by the
medical profession would not only be appreciated, but also enhance quality of life, as well as the quality
of medical encounters.
Abstract: Leslie Chan invites us to consider the uncritical acceptance of openness, proposing that there is no universal concept of open as the concept does not address how knowledge is created, shared and circulated in different communities and different contexts.
Leslie advocates for a need to decenter whiteness in both academic institutions and publishing, arguing that the standards of white patriarchal structures continue to exclude many voices from the scientific record and raising questions such as “who is deciding whom to include?” and “Inclusion into what?”.
Abstract: The Open Access movement has transformed access to publicly funded research outcomes. Since 2009 there has been a 216% increase in the number of Open Access journals registered with the Directory of Open Access Journals who have published over 5,276,127 articles between them. But what happens when open access content can’t be meaningful engaged with by those who rely on alternative formats? What if the structures of these outputs mean that, for many people around the world, open articles may as well remain behind a restrictive paywall.
Ben and Josie will discuss how Open Access could lead the way to ‘open accessibility’, how the WCAG legislation is impacting the work of public sector bodies to improve accessibility, and what more could be done to place responsibility on the private sector to create accessible content at point of creation.