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POZ Women's Empowerment Through Community-Based Research

03/09/2016 10:33 EST | Updated 03/10/2017 05:12 EST
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Mother and daughter holding hands on sofa

By Shazia Islam and Marisol Desbiens, Peer Research Associates, CHIWOS

"Planet 50-50 by 2030: Step It Up for Gender Equality" is a noble and necessary undertaking and the United Nations Sustainable Development Goals (SDG) to effectively eradicate AIDS can be a realistic possibility since we understand the correlation between gender inequality and POZ women's (women living with HIV) capacity to maintain their health and well-being.

Gender inequalities can exist in all socioeconomic and cultural spheres -- at times reflected in very obvious manifestations of male power and aggression, and at other times, in more subtle and historic systems and traditions that simultaneously exploit women's wisdom and devalue their labour. For instance, in our current year of 2016, in the areas of employment, women in North America still have to struggle against wage disparities, glass ceilings, old-boys-club brand of exclusion and discrimination, workplace sexual harassment, among other gross inequities and assaults on their dignity and humanity.

POZ women may face further incursions on their mental, physical, and emotional health, as gender-based disparities often interfere with socioeconomic stability. Employed may become unemployed or underemployed. Unstable housing may lead to a risk of homelessness.

Food insecurity may increase the signs and symptoms of poor nutrition. Being in an unhealthy and abusive relationship can severely affect a woman's sense of safety, security, and her mental and physical health. Not adhering to or not being able to access ARV treatment could bring about the health conditions that cause AIDS.

To add to this, POZ women who identify as Trans, LBQ2S, and/or who are racialized may face a greater degree of gender-based inequality and violence due to the rigid intolerance in heteronormative society towards gender identity, sexual orientation, and ethno-racial difference.

Against this backdrop we see the rise of certain life-affirming initiatives for POZ women as practiced in community-based research (CBR). The methods and results of CBR studies could potentially inform policy change and aid in the reduction of gender inequality. Having access to more resources, to an income source, and being able to connect with a group of women who have mobilized in solidarity can inspire support for an agenda that restores the rights and voices of women and girls.

The Canadian Women's HIV Sexual and Reproductive Health Cohort Study (CHIWOS) was launched in 2013 through Women's College Research Institute in Toronto, Canada as a response to serious gaps in health and community services for POZ women. The study takes the form of a comprehensive online survey administered by Peer Research Associates -- self-identifying women living with HIV. The survey not only documents the intersections and barriers POZ women face when accessing women-centred HIV services but also the key forms of support POZ women may or may not have that can all impact their sexual, reproductive, mental, and overall health and well-being.

CHIWOS was launched in Ontario, Quebec, and British Columbia with the aim of inviting as many POZ women as possible living in these three provinces to take part in the survey. Ontario has the largest group of peer research associates (PRAs), all of whom received extensive training to help them expand their research skills capacity. Ongoing support is available and accessible with the addition of a Provincial Coordinator in each province and a PRA representative for each regional team.

But aside from the various titles and roles that PRAs may take on in this study, most may feel gratified from the unique interactions they have with participants, and how during these interactions, the opportunity for further connection and learning on both sides is always there. Although PRAs are not expected to share too many details of their own lives with participants, when women hold and share space for one another, the stories inevitably come out sometimes with laughter and sometimes with tears.

There's something special when peers are engaging with the stories and experiences of peers. There's some common understanding and knowing equivalent to someone saying to us, "I get it." Wave 1 of CHIWOS invited connection among PRAs through training opportunities and monthly teleconferences and in-person check-ins; and then they were followed by the connection between PRAs and study participants. Currently, the study is administering Wave 2 where a reconnection between PRAs and participants are in full swing.

One of the most time-honoured tools that continues to empower women and girls all over the globe is superbly captured in the classic hit "That's What Friends are For" covered in 1985 by a quartet of music gods -- Dionne Warwick, Gladys Knight, Stevie Wonder, and Elton John -- to raise awareness and funds for the American Foundation for AIDS Research. Deep, abiding female friendships can inspire women and girls to do great things to improve their own lives and the lives of other women and girls even when the barriers seem insurmountable.

The participants, PRAs, and the entire research team of CHIWOS are examples of women's resilience and their innovative strategies to overcome injustice and oppression. Developing community-based initiatives such as CHIWOS where POZ women are fully integrated in the creation and implementation of the study can serve as a tool for self and collective empowerment and may ameliorate the circumstances of these women through peer-to-peer bonding, which could also improve their mental and emotional health.

Peers can ask peers those hard questions that appear in the survey, and can also guide the participant to realize her will to survive and most especially her desire to thrive. In small but significant ways, POZ women have the chance to be sisters doing it for themselves while moving the world towards 2030 with a hopeful eye on the imminent end of gender inequality.

Marisol Desbiens is a peer research associate and volunteer. She has been working in the HIV community for the past 8 years. Some of the organizations she has worked for include OAN, CAAT, OHTN, FIFE HOUSE, WOMEN'S COLLEGE and McMaster University. She has also volunteered at PWA in the Speaker's Bureau and Ontario HIV and Substance Use Training Program. Marisol is very engaged working in different HIV settings and enjoys working with PHAs from diverse communities.

Shaz Islam is a peer research associate for CHIWOS. She currently works at the Alliance for South Asian AIDS Prevention and provides services and support to South Asians living with HIV/AIDS. www.asaap.ca

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This blog is part of an International Women's Day series produced by the Interagency Coalition on AIDS and Development (ICAD) in recognition of International Women's Day 2016 (March 8). The series runs during the week of March 7, 2016 and will feature a selection of blogs written by our member and partner organizations who will share their broad range. Each provides their perspective and their insight on what must be done to achieve UN Women's campaign of "Planet 50-50 by 2030: Step It Up for Gender Equality" as we embark on the race to meet our 2030 Goals for Sustainable Development.

Disclaimer: The views and opinions expressed in this blog series are those of the authors and do not necessarily reflect those of ICAD.