Sitting in a boardroom at the Sheldon M. Chumir Health Centre, Tina Nash remembers the daunting process of creating her thesis, entitled “Life in the Shadows.”
The project examined the role HIV-status plays when it comes to the decisions that HIV-positive Indigenous women make surrounding their reproductive health and whether to have a child. To put together her thesis, Nash conducted semi-structured, in-depth interviews with three Indigenous women living with HIV.
“The depth and breadth of what they brought to those interviews was just so powerful for me and it spoke a lot to the things that women who are diagnosed with HIV actually face,” says Nash, a health promotion facilitator of the Indigenous mental health program with Alberta Health Services.
Due to historical trauma and social, economic and cultural factors, Indigenous women are the most susceptible group in Canada when it comes to contracting HIV. However, the current resources have so far been ineffective in supporting HIV-positive Indigenous women.
When Nash began her master’s degree in community health sciences at the University of Calgary 12 years ago, she was unaware of the emotional distress to come. In the earliest stages of creating her thesis, Nash’s partner at the time was diagnosed with HIV.
“All of a sudden, my world kind of came crashing down,” says Nash. “We have seven children together. I couldn’t sit with hearing the stories of the women I was interviewing because it almost mirrored what would possibly be my experience and it just hit too close to home.”
Of the many ways that HIV affects an individual, all participants in Nash’s study shared a major similarity — each of the three women are no longer able to have children.
“It’s not just the loss of having a child in your life, it’s the loss of a potential attachment,” says Nash. “It’s the loss of the ability to love or be loved. It’s the loss of feeling a sense of purpose or self-worth. It’s the loss of feeling like you’re fulfilling your role as a woman, if that’s how you perceive childbearing.”
Although Nash was not tested HIV positive, she is only one in many Indigenous women who are exposed to HIV in their lifetime.
In 2011, Indigenous women represented 48.8 per cent of HIV positive reports in Canada from 1998 to 2008, according to the Canadian Aboriginal AIDS Network (CAAN). Additionally, Indigenous women are almost three times more likely to contract HIV than non-Indigenous women.
There are many factors that play into the high rates of HIV in Indigenous women. According to Health Canada, “what differentiates discrimination against Aboriginal people living with or affected by HIV/AIDS is the history of oppression and social disintegration that has been meted out to Aboriginal, Metis and Inuit in Canada.”
Denise Lambert, an Indigenous leader at the International Indigenous Working Group on HIV & AIDS hosted by CAAN, believes that in order to do better for Indigenous women living with HIV, everyone needs to recognize the factors.
“My personal belief is that the more trauma you’ve experienced, whether that is yourself as an individual, through your family, or even through the generations, those are the factors when pulled together can be linked to being exposed to HIV,” says Lambert.
Nash emphasizes the prevalent and recurring factor of her participants being taken from their families as children and put into the foster care system, residential schooling, or adopted out into non-Indigenous families that led them to their eventual diagnosis of HIV.
“During their time in foster care or not being with their families, they experienced a lack of love, an inability to be able to love and it really impacted their sense of self-worth,” says Nash.
Gaye Warthe, chair of the department of social work and disability studies at Mount Royal University, explains that being displaced and leaving a strong Indigenous community can make young girls feel unsafe — sometimes leading to power struggles in future adult relationships.
“It’s colonialism,” says Warthe. “If you don’t feel safe in your own home, then you don’t talk about some of the risk factors that you’re experiencing.”
With a lack of self-worth and sense of safety, a person is more likely to engage in activities that lead to addiction, sexual promiscuity, unsafe sex practices and violence in relationships — all things linked to HIV.
“In Canada, the most vulnerable population is Aboriginal females,” says Waylon Yellowhorn, Aboriginal program coordinator of Strong Voices, a program with HIV Community Link in Calgary that was created in 2012 for HIV-positive Indigenous people.
“They’re more susceptible to trauma and violence.”
Yellowhorn works directly with individuals — not only people living with HIV — but also with those who are at risk of contracting it. However, Yellowhorn does not do any specialized work specifically for Indigenous women living with HIV despite the extremely high statistics.
Although experts believe a program tailored towards Indigenous women living with HIV would be effective, organizations are currently struggling to recognize the diversity and range of cultural experiences that each Indigenous woman has.
“Are the services actually flexible or adaptable enough to meet the needs that each unique woman brings?” asks Lambert.
But, according to Lambert, the resources currently available aren’t enough for Indigenous women living with HIV. There is the problem of accessibility — the abundance of information online isn’t reaching everybody, which is an issue in a population with high rates of poverty.
Lambert says that HIV-positive Indigenous women need more relational and focused one-on-one services. HIV-positive Indigenous women in need of help should be able to have open and safe conversations with other women in the same situation who are able to help.
“Indigenous women need the opportunity to make those choices. We need more than one service, and more than one kind of service,” says Warthe.
Because violence is a major risk factor when it comes to HIV, many Indigenous women living with HIV look for safety in women’s shelters, according to Warthe. But another challenge is the funding model for on-reserve shelters and off-reserve shelters.
“All the shelters in Calgary access funding through the provincial government,” says Warthe. “When we see on-reserve shelters, they’re eligible for funding through the federal government. They’re grossly underfunded.”
So what resources do Indigenous women have when they are exposed to or diagnosed with HIV?
However, at the time, Nash was unwilling to acknowledge the impact that HIV had on her life, and subsequently didn’t access the proper services.
Thinking of what could be done better for HIV-positive Indigenous women, Nash answered quickly and firmly.
“Compassion. Definitely compassion. Honouring of human dignity. Choice — providing more choice,” says Nash.
“We have to talk about racism, whether that is systemic, structural, epistemological, people’s own personal racist attitudes … not just about women, but about Indigenous women, and about Indigenous women who have HIV.”
- By Karina Zapata