CONCLUSION
CONCLUSION
CONCLUSION AND REFLECTIONSAND REFLECTIONSAND REFLECTIONSAND REFLECTIONS
In researching the sensory experience ‘between different projects there will be variations in the types of argument and experience ethnographers seek to represent to different audiences’ (Pink 2009:133). Visual and sensory anthropology is more than a system for things that are already visible as it enables “seeing” people’s experiences. In this research I have used visual methods to make visible the hidden experiences of chronic illness. This has been possible as photographs are now more able to express the narratives that participants create alongside them. My main focus has been to bring the hiddenness of chronic illness into a visible position and to bring a greater level of understanding to what it means to live with a chronic illness. Chronic illness impacts on the whole person so the interconnectedness, created through visual methods and narrative, is essential and valuable in communicating embodied sensory illness. That written and visual accounts are equally important restores greater depth to research method and representation (Pink
2007:94).Visual methods go beyond simply engaging the sense of sight but connect the whole body. Visual anthropology enables a sensory dialogue through the eyes, mind and between the body’s of people who live with chronic illness and those who do not. Anthropology with its capacity to embrace the whole story has the ability to collaborate with this embodied sensory knowledge. In wanting to make the illness experience more visible I have discovered that visibility is a complex interrelationship of senses, history and experience.
Through undertaking this research I have been amazed at the way it has evolved while the focus to make a hidden experience visible has
tasks in ways that were unexpected and enlightening and through this method flexibility enabled it to grow as develop as it needed. For
participants making chronic illness more visible appears to have been a positive enterprise. Visibility often means authenticity to illness and it is interesting that a visible approach has been taken in the UK in the book Lost Voices.
In this thesis I have suggested that visual representations and symbols of illness aid society in deciphering what is chronic illness and how to interact with people impacted by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical sensitivity. As a society we look for and interpret our world through our relationships and our senses, which often means the less visual are marginalised.
WHY THE HYPERTEXTUAL SELF-SCAPE
The hypertextual self-scape enables different envisioning of the self in chronic illness by creating meaning for the participant and the viewer. Out of this process of discovery, the concept of hypertextual self-scape became an integrating component of metaphor. The participant’s hypertextual self-scape represented gathering embodied sensory
knowledge, selecting its visual representation, and attaching the symbols and discourse to make the hidden experience visible. These were
placed on a reflexive surface and surrounded in a frame of narrative. Through this creation hypertextual access became possible between the participant and the audience. Due to the permeability of the hypertextual surface and frame the viewer can enter into varying levels of
understanding of chronic illness, by reading the narrative, looking at the surface representation or stepping through the hypertextual surface into a sensory experience of chronic illness. In walking through the frame into the composite hypertextual self-scape metaphors the body of the viewer allows some of the sensory experience of chronic illness to cross the barrier of their skin. Images and narrative interact through multiple layers of sensory discourse from the writer or creator to the viewer or reader both having value and enhancing the other. This shows how all
information and representation has value (Pink 2006:17). The outcome is that knowledge can become embodied.
The creation of the “MeBoxes”, the taking of the photographs and the creation of the composite images has involved a collaborative approach between participants, myself, and in the future the audience who will collaborate in the creation of meaning through their viewing. In viewing the masks and the composite hypertextual self-scape images the spectator is asked to become a part of the sensory experience. The masks through their reference to the body create visible hypertextual self-scapes through their “skin”, in a different format the images in chapter six engage the body through their digital surface creating the composite hypertextual self-scape metaphors.
METHODOLOGICAL ISSUES
The different visual techniques of the masks, “MeBoxes” and
hypertextual self-scape images elicited different data which expanded the types of information I could access in talking with participants. This method enabled a variety of different representations and each had the potential to be a thesis in themselves. The main regret I have is that I have been unable to look indepth at the support group meetings I ran. This is unfortunately due to word count and time frames. The meetings showed how people with chronic illness interacted with each other and also resulted in different visual representations to the individual and couple sessions. The method of focusing on a single object often elicited more data about the object as participants sat with it, as was the case with Mavis and the wire. The method I used also impacted on one of these meetings. It has changed how they ran their sessions as it enabled them for the first time in approximately a year to be able to talk about their experiences as a group.
MASKS
For the masks the only instruction was to paint, write, collage etc… the blank mask on the outside to show what they perceived people see of
chronic illness and on the inside to put the internal experience of illness, as the participant felt was most appropriate to themselves. The type of mask produced depended on the artistic ability of the participant but this method of showing the differences between the internal and external experience was accessible to most of the participants. Not all
participants completed a mask and several participants asked for more clarification about what I was asking for. If the masks had been the main method more time could have been spent speaking with participants about them. However, I did not expect the detail and information that I received or the connection that some participants would have with their masks. Many participants have asked for their masks to be sent back to them after they had been photographed and one has become a gift to a friend. One of the participants has since had a portrait taken with the mask she created and placed a photograph of her mask on facebook.
“MeBOXES”
Many of the participants during the initial collection of the objects took time to reflect on their embodied experience as they created their visual representations.
The time delay between the two interviews created problems as some participants had forgotten the reasons for choosing objects. It also meant that the boxes were put away to be looked at closer to the second interview which resulted in lost momentum and enthusiasm that had developed for many participants during the first interview. This method also meant that as a researcher I initially turned up at people’s homes with a large bag of cardboard boxes and the large (heavy) plastic box full of different items. I startled one of my participants when she answered the door and saw everything I was carrying.
The “MeBoxes” took on different meanings to participants. For some the box was put away, for others it became something that was occasionally referred to but in each of the situations the boxes have been kept
predominately intact. Anne, because of her “MeBox”, found a place to put a piece of writing that never had somewhere to belong. Beth placed