Visioning Health!

1. Visioning Health! Utilizing Strengths-based & Arts-Based Approaches in Community-based Participatory Research for POZ Women

2. VH Research Team • Visioning Health Researchers: Tonie, Laverne, Stacy, Doris, Katrina, PAW, Krista, Liz, Candy, Melanie, Marie, Lori, Elaine* Melanie, 1968 – 2012 Stacy, 1972 - 2012 *Some women have chosen to use pseudonyms to protect their identity.

3. VH Research Team • Visioning Health Research Team: Tracey Prentice, Doris Peltier, Kerrigan Beaver, Renee Masching, Doe O’Brien-Teengs, Geri Bailey, Denise Spitzer • Visioning Health Partners & Collaborators: Canadian Aboriginal AIDS Network, Ontario Aboriginal HIV / AIDS Strategy, Pauktuutit Inuit Women, 2-Spirited People of the 1st Nations, Native Women’s Shelter of Montreal, University of Ottawa, • Visioning Health Thesis Committee: Denise Spitzer, Renee Masching, Charlotte Reading, Judy Mill • Special thanks to Wanda Whitebird (OAHAS), Sharp Dopler (OAHAS) and Carrie Martin (NWSM).

4. Acknowledgements • Kecia Larkin for coining the acronym PAW (Positive Aboriginal Women). This self-identification is important because “it imparts a dual meaning to being 'positive' and breaks down a first barrier in how Aboriginal women are portrayed by utilizing an assets-model approach.“ (CAAN 2010. EONS: 5 Year Strategy for Aboriginal Women and HIV) • Our partners, families and otherswho support us in our work. • Our funders for making this work possible: • Canadian Institutes of Health Research, Doctoral Training Award • Ontario HIV Treatment Network, Doctoral Training Award • AK – NEAHR, Seed Project Funding • Pfizer Canada, Unrestricted Educational Grant

5. Project Background

6. Contact with Colonizers

7. Colonial History of Research

8. The Importance of Stories “We live by stories [and] we also live in them. One way or another we are living the stories planted in us early or along the way, or we are also living the stories we planted – knowingly or unknowingly – in ourselves. We live stories that either give our lives meaning or negate it with meaninglessness. If we change the stories we live by, quite possibly we change our lives” (Thomas King, 2003, p. 154; quoting Ben Okri, 1997)

9. Pathogenic Model • Portraits of Aboriginal sickness and misery act as powerful social instruments for the construction of Aboriginal identity. Epidemiological knowledge constructs an understanding of Aboriginal society that reinforces unequal power relationships; in other words, an image of sick and disorganized communities can be used to justify patterns of paternalism and dependency (O’Neil, Reading, Leader, 1998, p.230).

10. A Dangerous Story for PAW

11. A Different Kind of Story 1) Create space / opportunity for PAW to tell a different kind of story 2) Engage with PAW in arts-informed research that would create new knowledge & knowledge products that were strengths-based, culturally-relevant and gender-specific

12. The way researchers acquire knowledge in indigenous communities may be as critical for eliminating health disparities as the actual knowledge that is gained about a particular health problem (Cochrane et al. 2008, p.22) Women must WANT to be there, ie., make it fun, engaging, safe, respectful Guiding Principles

13. De-colonizing methodology CBPR & OCAP / Indigenous knowledge / Shared decision-making/ Two-way capacity-building / Strengths-based & Arts-informed / Four R’s Creating Safety in HIV-CBR with Positive Aboriginal Women

14. Creating Safety in HIV-CBR with Positive Aboriginal Women • “Shaped like a woman” • Supportive environment / Safe space / Non-judgment / Harm reduction / Flexibility, ie. responsive/ Fair compensation / Child-care or children welcome • Sharing circles • Women’s Support

15. Modified Photovoice Process TO: 6mths = 50+ hrs Skype: 3mths = 30 hrs MTL: 4days = 30 hrs All Groups Mtg to Share, Compare, Analyze, Recommend (1.5 days) 10 Group Photo Exhibitions To Date & 17 Presentations

16. Who Participated? (N=13) • 9 First Nations, 4 Inuit • 4 provinces and 6 cities/towns/reserves • 12 urban, 1 reserve • 2 employed full-time, 3 part-time or contract, 8 social assistance • Newly diagnosed to long-term survivors • Late 20s to late 50s • 11 straight, 1 two-spirit, 1 trans

17. Major Themes • “You Don’t Get to Tell Me Who I Am!”: Re-Claiming Voice & Identity • “I’m HIV+, So F*cking What!”: Stigma, Discrimination and the Challenges of Living Pawsitive • “I Don’t Feel So Lonely Anymore”: The Need for Safe Spaces & Places • “I’m Still Here!”: Resistance and Resilience • “Creator Gives Us What We Need”: Culture, Tradition & Spirituality • “Water is Women’s Responsibility”: Gender, Culture & Health • “Connecting Helps Us Heal”: Family, Community, Culture & the Environment

18. Girls

19. Circle of Light

20. Lonely Street

21. Heartsong of Reclamation

22. Cedar Boughs

23. A Different Kind of Story

24. Impact of safety on research?

25. Meegwetch, Niá:wen, Thank You, Merci For more information, please contact: Tracey Prentice, tpren087@uottawa.ca OR Doris Peltier, dorpeltier@yahoo.ca