Candice is a mother of three beautiful children (2 biological) ages 21, 4, and 3. She is an aboriginal woman from the Cree/Dene nation. Candice happens to be in recovery from substance abuse going on 7+ years. She was diagnosed as being HIV+ 22 years ago when pregnant with her now 21 years old (HIV-) daughter. Candice worked on the PLDI Impact Evaluation and loves doing peer work because of the giving back factor which keeps her grounded while also giving others hope. In Candice’s own words, “I hope to continue working with peers until I grow up!”
What first piqued your interest in HIV research and evaluation?
I was hired as an outreach worker for the MAKA project about 10 years ago. I played several roles with that project and research was one of them. It’s interesting because Janice, who we are working with now, worked on this project before I got involved. Back then, we were the first to use rapid HIV tests in the Downtown Eastside (DTES). We did research with marginalized woman in the DTES to understand their history and drug use (causes). We also wanted to know the best way to get HIV medicines to these street entrenched women, to someday set up a kind of a delivery service so that everyone was taking their medications. It was quite a big experience for me. Through networking, I am happy to say I met others who were in the same field of interest as myself that led me to other peer research opportunities.
I have been HIV positive for 22 years and I had a lot of friends in the DTES who weren’t taking their medications properly or educated about their ARVs importance. I watched many of them die of AIDS at around the time of the MAKA project. Nowadays, people are living a lot longer and I like to think that the MAKA project was a big part of that. I do believe we succeeded in finding ways of helping people get their medication and live longer fuller lives. As a peer researcher, I did focus groups, outreach and was trained by the MAKA project, which gave me knowledge about what HIV and hepatitis C (co-infection) do to the body. I took that knowledge to the focus groups, where 8-12 women would meet each week. We sent them home with an armful of knowledge, some money, and a meal. It was surprising to find out how little people knew about how they could get HIV. Some thought they could get it off of sharing cutlery but not from giving blow jobs. It was eye-opening to see the lack of knowledge around HIV, nevertheless it was really rewarding to arm these women with safety tips, protection and a head full of HIV education.
What role do you think HIV/AIDS research and evaluation plays in the “real world”?
We need to learn how to how to live longer, healthier and happier. Just because you are living longer doesn’t necessarily mean you are living happier. So we need to figure out ways to have happier, fuller, balanced lives. Research and evaluation helps us learn about what’s working in the community and what’s not, and passing on that knowledge to make change.
How do you engage the community in your work?
I like to continue going out and speaking about my own HIV experience and increasing awareness about HIV and what it means. There are still people in my family who are afraid of me and my HIV status. I really enjoy doing outreach – I love working with women hands-on, and doing harm reduction and helping women to find resources like shelters, recovery houses, treatments, affordable to free food, and clothing. Living on the streets makes these resources hard to come across and even scary to access. This is where leading and living by example come in handy.
With regard to the PLDI Impact Evaluation, I’m still fumbling around with how to engage community. I like that it’s a leadership program and it empowers people. After I was diagnosed, it was hard to work because every time I would, I would get sick and that would beat-up my confidence. So this program gives people experience to go out in the world and work on their hopes. As a Peer Evaluator, I have the opportunity to go out in the world and meet people who face these same issues. It’s a networking opportunity with the community, to get my feet wet, and meet people who are like-minded and have the same dreams and goals as myself. It gives me encouragement to go forward just by watching them go forward.
If you had unlimited funds, which area(s) of research or evaluation would you invest in?
Addiction, HIV, and harm reduction. They all go hand-in-hand. But mostly addiction. I have had a dream for many years of opening my own treatment and recovery centre focused on health and well-being and it would definitely have an HIV component to teach women about their physical, spiritual, mental, and emotional health. For me, those four elements of well-being are so important. These four components make up the Medicine Wheel, and health and well-being in the Aboriginal teachings.
There’s strength in peer work. It’s easier to open up to people who have been there. Saying that, I believe research needs resources to support participants such as counselors or mentors. I believe that people need to be talked down from the ledge after participating in some heavy research because we – the participants – open up about heavy things like HIV diagnoses, drug use, and even abuses of all kinds. I believe we can’t just send people home right after an HIV diagnosis without having a counselor to talk them down and equip with resources. If you send people home without knowledge, you are sending them home thinking they have a death sentence. And it isn’t a death sentence. Doctors giving HIV diagnoses need to have counseling resources to make sure people are emotionally and mentally stable before they walk out the door.
It’s a lifelong dream to open my own wellness and treatment centre because I only want to see our community get better and stronger, and to help people find their way out of the dark.
If you were able to choose, what is the natural talent you’d like to be gifted with and why?
Maybe psychic abilities. I would like to be able to harness those abilities to help people get healthier by using my intuition. I would love to be psychic!