Abstract
The body mapping literature is replete with moving, powerful data, however, less attention has been paid to how the research experience itself can produce meaningful outcomes for those involved. This chapter explores these issues, which are of ethical importance because they highlight the multiple ways in which this research experiences has impacted the lives and political outlooks of the women and men in the study. The primary focus is transformation, which emerged as a seminal theme and experience among both participant groups. The body mapping activities were described in therapeutic terms as helping them make sense of who they are and the systemic forces that have shaped their lives in ways that were often beyond their control, which lessened their tendency to blame themselves for particular life events or experiences (i.e. addictions, poverty, acquiring HIV, sex trade participation). They also discussed how participating in the workshop reconfigured their social relationships among each other and, especially for the women, service providers and others in the HIV research field. I also discuss how this project ushered in transformative changes in my life, on account of the deep connections fostered with participants and some of our shared life struggles.
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Notes
- 1.
Which, rather chillingly, measure “the size of a grave” or six feet by three feet (Hawkins 1993: 757). These remain the measurements that those wishing to contribute panels to the quilt must adhere to.
- 2.
The organizational home of the quilt, which was initially called the “NAMES Project quilt.” Over time it came to be known as the “AIDS memorial quilt”.
- 3.
Which at the time of writing (August 2016) contains over 49,000 individual panels remembering almost 100,000 names, and it weighs over 54.5 tons. Over the past 5–10 years, the Names Project/Memorial Quilt organizers receive an average of one new panel every day of the year (Williams 2016).
- 4.
Whose mission is to utilize “art to fight AIDS by provoking dialogue, supporting HIV + artists, and preserving a legacy, because AIDS is not over” (https://www.visualaids.org/).
- 5.
Which is part of the celebration, awareness, and education activities that take place during International HIV/AIDS Day, held annually on December first.
- 6.
Initial ideas about a venue to display the maps included a trendy shoe store that has a beautiful shop layout and with whom one of the team members is associated. This option was not popular among all of the participants, who were more interested in the art show-dinner event we ended up organizing.
- 7.
See also Futch and Fine’s (2014: 55) discussion of how mapping/visual data allow the participants to enter researchers’ minds/memory during analysis in ways that are unique compared to text-based data.
- 8.
See Warden (2012) for a similar discussion of PTSD and emotional trauma in ethnographic research.
- 9.
Who murdered forty-nine women from the Downtown Eastside neighbourhood in the late 1980s–1990s, most of whom were poor women struggling with addictions, racism, and various forms of socio-economic, sexual, and historical trauma (Cameron 2010). I lived in Vancouver during the Pickton trial of 2007, which was a deeply disturbing experience that can only be described as emotionally surreal (See Baldwin and Orchard 2009).
- 10.
She has led over twenty-five body mapping workshops all over the world.
References
Aldridge, J. 2014. Working with vulnerable groups in social research: Dilemmas by default and design. Qualitative Research 14(1): 112–130.
Bagnoli, A. 2009. Beyond the standard interview: The use of graphic elicitation and arts-based methods. Qualitative Research 9(5): 547–570.
Baldwin, D., and T. Orchard. 2009. Working words: Representation and reflection of two former sex trade workers covering the Pickton trial in Vancouver, British Columbia. Feminist Media Studies 9(4): 505–509.
Barone, T., and E. Eisner. 2011. Arts based research. Thousand Oaks, California: SAGE.
Berger, R. 2013. Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research 15(2): 219–234.
Biehl, J. 2005. VITA: Life in a zone of social abandonment. Berkeley: University of California Press.
Blair, C., and N. Michel. 2007. The AIDS memorial quilt and the contemporary culture of public commemoration. Rhetoric & Public Affairs 10(4): 595–626.
Bowtell, S., M. Sawyer, R. Aroni, J. Green, and R. Duncan. 2013. “Should I send a condolence card?”: Promoting emotional safety in qualitative health research through reflexivity, Ethical Mindfulness. Qualitative Inquiry 19(9): 652–663.
Braidotti, R. 2011. Nomadic subjects: Embodiment and sexual difference in contemporary feminist theory, 2nd ed. New York: Columbia University Press.
Briggs, D. 2013. Emotions. Ethnography, and crack cocaine users, emotion, space and society 7: 1–12.
Cameron, S. 2010. On the farm: Robert Pickton and the tragic story of Vancouver’s missing women. Toronto: Alfred A. Knopf Canada.
Capozzola, C. 2002. A very American epidemic: Memory politics and identity politics in the AIDS memorial quilt, 1985–1993. Radical History Review 82: 91–109.
Carocci, M. 2010. Textiles of healing: Native American AIDS quilts, TEXTILE: Cloth and Culture, 8(1): 68–84.
Carter, A., Green, S., Nicholson, V., O’Brien, N., Sanchez, M. de Pokomandy, A., Loufty, M., Kaida, A., and CHIWOS Research Team. 2015. Breaking the glass ceiling: Increasing the meaningful involvement of women living with HIV/AIDS in the design and delivery of HIV/AIDS services. Health Care for Women International 36(8): 936–964.
Catungal, J., and E. McCann. 2010. Governing sexuality and park space: Acts of regulation in Vancouver, BC. Social & Cultural Geography 11(1): 75–94.
Chilton, G. 2013. Altered inquiry: Discovering arts-based research through an altered book. International Journal of Qualitative Methods 12: 457–477.
Crawford, A. 2010. If ‘the body keeps the score’: Mapping the dissociated body in trauma narrative, Intervention, and Theory. University of Toronto Quarterly 79(2): 702–719.
Devine, C. 2008. The moon, the stars and a scar: Body mapping stories of women living with HIV/AIDS. Border Crossings (CATIE). www.catie.ca/pdf/bodymaps/BC_105_BodyMapping.pdf.
Francis, D., and C. Hemson. 2012. “See the hope”—using participatory visual arts methods to challenge HIV related stigma. Education as Change 10(2): 53–65.
Franklin, M. 2012. Know thyself: Awakening self-referential awareness through arts-based research. Journal of Applied Arts & Health 3(1): 87–96.
Futch, V., and M. Fine. 2014. Mapping as a method: history and theoretical comments. Qualitative Research in Psychology 11: 42–59.
Garber, E. 2004. Social justice and art education. Visual Arts Research 30(2): 4–22.
Gastaldo, D., Carrasco, C. and Magalhaes, L. 2012. Entangled in a web of exploitation and solidarity. Retrieved from http://www.migrationealth.ca/undocumented-workers-ontario/summary-findings.
Guillemin, M., and S. Drew. 2010. Questions of process in participant-generated visual methodologies. Visual Studies 25(2): 175–188.
Hawkins, P. 1993. Naming names: The art of memory and the NAMES project AIDS quilt. Critical Inquiry 19(4): 752–779.
Hodgins, M. and Boydell, K. 2014. Interrogating ourselves: Reflections on arts-based health research. FORUM: Qualitative Social Research, 15(1), Art. 10, January.
Hogan, S., and S. Pink. 2010. Routes to interiorities: Art therapy and knowing in anthropology. Visual Anthropology 23: 158–174.
Huss, E. 2007. Symbolic spaces: Marginalized Bedouin women’s art as self-expression. Journal of Humanistic Psychology 47(3): 306–319.
Jones, A. 1998. Body art/performing the subject. Minneapolis: University of Minnesota Press.
Jones, C., and J. Dawson. 2000. Stitching a revolution—the making of an activist. New York: Harperone.
Kelly, P. 2008. Lydia’s open door: Inside Mexico’s most modern brothel. Berkeley: University of California Press.
Learmonth, M., and K. Huckvale. 2012. The feeling of what happens: A reciprocal investigation of inductive and deductive processes in art experiment. Journal of Applied Arts & Health 3(2): 97–108.
Leavy, P. 2009. Method meets art: Arts-based research practice. New York: The Guilford Press.
Levine, E. 2011. From social change to art therapy and back again: A memoir. In Art in action: expressive arts therapy and social change, ed. E. Levine, and S. Levine, 31–41. London, UK: Jessica Kingsley Publishers.
Lu, L., and F. Yuen. 2012. Journey women: Art therapy in a decolonizing framework of practice. The Arts in Psychotherapy 39: 192–200.
MacGregor, H. and Mills, E. 2009. Mapping change and continuity: living with HIV as a chronic illness in South Africa. Institute of Development Studies. http://www.ids.ac.uk/publication/mapping-change-and-continuity-living-with-hiv-as-a-chronic-illness-in-south-africa.
Mand, K. 2012. Giving children a ‘voice’: Arts-based participatory research activities and representation. International Journal of Social Research Methodology 15(2): 149–160.
Martin, A. 1996. Perfection is in the mind: An interview with Agnes Martin, by J. Simon (12-page document).
McNiff, S. 2011. From the studio to the world: How expressive arts therapy can help further social change. In Art in action: Expressive arts therapy and social change, ed. E. Levine, and S. Levine, 78–92. London, UK: Jessica Kingsley Publishers.
Morgan, J. and The Bambanani Women’s Group. 2003. Long life: Positive HIV stories. North Melbourne, Australia: Spinflex Press.
Morris, C. 2011. Remembering the AIDS quilt. East Lansing: Michigan State University Press, Project MUSE. Ib. 30 Jun. 2016. https://muse.jhu.edu/.
Nabulime, L., and C. McEwan. 2010. Art as social practice: transforming lives using sculpture in HIV/AIDS awareness and prevention in Uganda. Cultural Geographies 18(3): 275–296.
Packard, J. 2008. ‘I’m gonna show you what it’s really like out here’: The power and limitation of participatory visual methods. Visual Studies 23(1): 63–77.
Pence, E. 2015. Acts of will: Art, AIDS, America, Los Angeles Review of Books (December 23). https://lareviewofbooks.org/article/acts-of-will-art-aids-amLukea/#!.
Persson, A., K. Race, and E. Wakeford. 2003. HIV health in context: Negotiating medical technology and lived experience. Health 7(4): 397–415.
Pillow, W. 2003. Confession, catharsis, or cure? Rethinking the uses of reflexivity as methodological power in qualitative research. Qualitative Studies in Education 16(2): 175–196.
Pink, S. 2001. Doing visual ethnography. London: SAGE.
Potash, J. 2013. A more complete knowing: The subjective objective partnership. Journal of Applied Arts & Health 4(1): 49–56.
Schildrick, M. 2002. Embodying the monster: Encounters with the vulnerable self. London: SAGE.
Shilts, R. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Andrew’s Press.
Spencer, D. 2010. Introduction: Emotional labour and relational observation in anthropological fieldwork. In Anthropological fieldwork: A relational process, ed. D. Spencer, and J. Davies, 1–47. Newcastle upon Tyne: Cambridge Scholars Publishing.
Stein, C., and E. Mankowski. 2004. Asking, witnessing, interpreting, knowing: conducting qualitative research in community psychology. American Journal of Community Psychology 33(1/2): 21–35.
Warden, T. 2012. Feet of clay: Confronting emotional challenges in ethnographic experience. Journal of Occupational Ethnography 2(2): 150–172.
Watney, S. 1987. Policing desire: Pornography, AIDS, and the media. Minneapolis: University of Minnesota Press.
Williams, R. 2016. Director of operations of the NAMES Project. AIDS Memorial Quilt (Personal Communication, July 5).
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Orchard, T. (2017). To Change and Be Changed: Transformative Research Experiences. In: Remembering the Body. SpringerBriefs in Anthropology(). Springer, Cham. https://doi.org/10.1007/978-3-319-49861-4_4
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