The body offers a point of common, concentrated interest for both patients and physicians. For patients, disease progression, following trajectories of blood, muscle and bone, underscores one's dependence on the body. Following diagnosis, physicians act on bodies and monitor outcomes of treatment intervention. For both, the body can inspire an appreciation of its resilience and strength.
Body mapping offers both a metaphor and means of recognizing the fluid tracings of the personal, social, geographical, political and emotional experience of journeying with illness through life. It originated in South Africa to counteract stigma and fear by recognizing personal stories of living with HIV.1 Activists have since come together in other countries to organize body mapping workshops — including a recent one in Edmonton, Alberta.
After receiving training from the Canadian AIDS Treatment Information Exchange and the Regional Psychosocial Support Initiative in South Africa, HIV Edmonton's Artist-in-Residence Ted Kerr and Education Coordinator Lynn Sutankayo organized a body mapping retreat in Edmonton in August 2008. Each of the 3 participants had his own motivation for taking part in the workshop, but all shared the desire to take the time — in the midst of health care concerns, doctor visits, taking medications, and other commitments and responsibilities — to simply reflect on their lives.
The results of their creative efforts were displayed in Living with X — A Body Mapping Exhibit Depicting the Realities of Living with HIV at The Carrot Community Arts Coffeehouse in Edmonton last month.
The exhibit included vibrant, larger-than-life images that were developed from outlines of the bodies of the 3 men, traced on large sheets of paper. Following an ordered approach developed by Jane Solomon of the South African initiative,2 each artist explored his identity through image and text superimposed on an outline of his body. They began by inscribing their names and places of birth, and then followed with representations of significant personal memories and turning points, including those related to living with HIV, imposed over their bodies. An overlapping outline of another person acknowledged the help they had received; other sources of strength were recognized in word and image.
Each artist developed a symbol of his personal power. Jim located the astrological sign Aries (represented by a ram) on his brain. David depicted an image of his power symbol, a horse, on his mouth. The third artist (who preferred to remain anonymous) located a dagger on his forearm.
The participants described experiencing a heightened awareness and appreciation of the various threads and storylines making up their lives. They noticed the sometimes limiting ways in which they had narrated their stories, and they had a renewed appreciation of all that helped them to sustain their courage, integrity and hope. In addition, they experienced a renewed commitment to promoting increased acceptance and understanding that would help reduce the stigma of HIV, a fundamental goal of the exhibit.
Ted Kerr, Canada's first artist-in-residence at a community organization that provides support, education and advocacy in relation to HIV/AIDS, said “People with HIV can be in charge of their own representation. AIDS quilts were created to commemorate those lost to AIDS by others left behind. The unique stories depicted in these body maps are not dealing with the prospect of death, but represent what it is like to live with HIV and AIDS.”
Body mapping supports a process of personal reflection and making meaning that relates to one's lived experience of illness. It can also be used to augment medical histories by contributing to the understanding the patient as a whole person, which may, in turn, yield supplementary information that is relevant to treatment and patient education.3 Heightened awareness of illness as lived through the body offers a way to connect with patients about their experience of illness, which may also be of significant therapeutic value.4 Other possible body mapping applications come to mind, such as body mapping with patients with eating disorders or those living with chronic pain.
As a cartography that recognizes the lived experience of illness, body maps reveal how the biomedical intertwines with an intimately personal history. The body maps in this exhibit remind us to take the body seriously. They also allow us to appreciate the experience of HIV/AIDS and related experience of stigma, in ways that allow new possibilities to emerge — for self, others and our communities.
Footnotes
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See the body maps in progress online (www.cmaj.ca).
REFERENCES
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