Washington D.C., USA, July 2012www.aids2012.org Utilizing Strengths-based & Arts-Based Approaches in Community-based Participatory Research for POZ Women

Washington D.C., USA, July 2012www.aids2012.org VH Research Team Visioning Health Researchers: Tonie, Laverne, Stacy, Doris, Katrina, PAW, Krista, Liz, Candy, Melanie, Marie, Lori, Elaine* Melanie, 1968 – 2012 Stacy, *Some women have chosen to use pseudonyms to protect their identity.

Washington D.C., USA, July 2012www.aids2012.org 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 1 st 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).

Washington D.C., USA, July 2012www.aids2012.org 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 EONS: 5 Year Strategy for Aboriginal Women and HIV) Our partners, families and others who 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

Washington D.C., USA, July 2012www.aids2012.org Project Background

Washington D.C., USA, July 2012www.aids2012.org Contact with Colonizers

Washington D.C., USA, July 2012www.aids2012.org Colonial History of Research

Washington D.C., USA, July 2012www.aids2012.org 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)

Washington D.C., USA, July 2012www.aids2012.org 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).

Washington D.C., USA, July 2012www.aids2012.org A Dangerous Story for PAW

Washington D.C., USA, July 2012www.aids2012.org 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

Washington D.C., USA, July 2012www.aids2012.org Guiding Principles 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

Washington D.C., USA, July 2012www.aids2012.org Creating Safety in HIV-CBR with Positive Aboriginal Women De-colonizing methodology o CBPR & OCAP / Indigenous knowledge / Shared decision-making / Two-way capacity- building / Strengths-based & Arts-informed / Four R’s

Washington D.C., USA, July 2012www.aids2012.org Creating Safety in HIV-CBR with Positive Aboriginal Women “Shaped like a woman” o Supportive environment / Safe space / Non-judgment / Harm reduction / Flexibility, ie. responsive / Fair compensation / Child-care or children welcome o Sharing circles o Women’s Support

Washington D.C., USA, July 2012www.aids2012.org Modified Photovoice Process 1.Group Recruitment 2.Group Orientation, Ground Rules & Preferences 3.Group Photo Training & Fieldtrip 4.10 Bi-Weekly Group Meetings (In-Person) 5.Photo Exhibition 1.Group Recruitment 2.Group Orientation, Ground Rules & Preferences 3.Group Photo Training & Fieldtrip 4.9 Weekly Group Meetings (Skype) 1.Group Recruitment 2.Group Orientation, Ground Rules & Preferences 3.Drum-Making Workshop & Traditional Teachings 4.Drum Decorating Workshop, Songs & Traditional Teachings 5.Drum Awakening Ceremony, Traditional Teachings All Groups Mtg to Share, Compare, Analyze, Recommend (1.5 days) 10 Group Photo Exhibitions To Date & 17 Presentations TO: 6mths = 50+ hrsSkype: 3mths = 30 hrsMTL: 4days = 30 hrs

Washington D.C., USA, July 2012www.aids2012.org 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

Washington D.C., USA, July 2012www.aids2012.org 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

Washington D.C., USA, July 2012www.aids2012.org Girls

Washington D.C., USA, July 2012www.aids2012.org Circle of Light

Washington D.C., USA, July 2012www.aids2012.org Lonely Street

Washington D.C., USA, July 2012www.aids2012.org Heartsong of Reclamation

Washington D.C., USA, July 2012www.aids2012.org Cedar Boughs

Washington D.C., USA, July 2012www.aids2012.org A Different Kind of Story

Washington D.C., USA, July 2012www.aids2012.org Impact of safety on research?

Washington D.C., USA, July 2012www.aids2012.org Meegwetch, Niá:wen, Thank You, Merci For more information, please contact: Tracey Prentice, OR Doris Peltier,