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A table of metaphors : the visual representation of chronic illness : a thesis presented in partial fulfilment of the requirements for the degree of Master of Arts in Social Anthropology at Massey University, Albany, New Zealand
For people who live with Myalgic Encephalomyelitis / Chronic Fatigue
Syndrome, Fibromyalgia and Multiple Chemical Sensitivity syndrome
illness is a hidden construct. The body does not display the chronicity of
the internal experience. This thesis removes the barrier between what is
experienced and what is visible by creating visual means of
communicating the body’s hidden experience. The place of the viewer is
part of this discussion. Through visual methods digital photographic
techniques and the current interest in sensory anthropology the
embodied sensory chronic illness experience is explored. The hidden
experiences were made visual creating “MeBoxes” and masks which
showed both the external and embodied internal experiences of chronic
illness.
As the process of working with and walking beside the participants
developed, I found that the discourse on imaging within the literature was
inadequate to show the real lived experiences of those with chronic
illness. My interactions with the people of this thesis and the process of
honouring their experiences required a model that would encourage the
viewer to new and perhaps unrealised depths of participation to
understand the participant’s multi-faceted and multi-layered experiences.
Part of the discussion is the ability of images to communicate sensory
experience as is the case with Munch’s The Scream and Picasso’s
Guernica. Through the use of a hypertextual self-scape I show how
participants created access to their experiences through their visual
representations and through a collaborative approach became composite
hypertextual self-scape metaphors.