Madeline is part of the Community Based Research and Evaluation section of the PAN team. In addition to working with PAN, they have worked at Pacific Hepatitis C Network, and is also on staff with YouthCO as the Mpowerment Fraser East Coordinator. Madeline follows in the Meet the People at PAN tradition with the 5 Question Challenge.
What first piqued your interest in the HIV sector?
During my undergrad, I got more and more invested in the idea that even though Canada has a universal health care system, health care (and the medical system in general) didn’t work for a lot of people in Canada. We are faced with what is functionally a patchwork system—where some people get the care they need, and some people (for many reasons, including the social determinants of health, differences in what provincial health care systems cover, and stigma, just to name a few) are shut out. This made me feel angry, but I had a hard time conceiving of what I could actually do about it.
More recently, I started in this sector focusing on hepatitis C, and through that work, heard many stories of people being shut out by health care. My knowledge of HIV was extremely limited, but I quickly came to the realisation that the very issue I had been so angry about (people slipping through the cracks when it comes to accessing the care they need) was a huge reality when it came to HIV. I began to draw connections between what I was seeing in the hepatitis C community and what was happening within the sector with HIV. I feel very strongly that unless we dig into the barriers that are keeping people from being able to access care and do so in a respectful position of learning and listening, we will never see the system fundamentally change. So—to give a long answer to a short question—my interest in the HIV sector was piqued when I was able to see the big picture of how HIV plays into this inequity in health, and realise that only if I got involved directly could I participate in tearing down those barriers.
What role do you think HIV/AIDS research plays in the “real world”?
I think the history of HIV/AIDS research shows that in many ways, it paved the way for a lot of voices to be heard and listened to. I think we have that same role and responsibility in HIV research today—to ensure that in everything we do, we are working to “pass the mic” to people with lived experience and to prioritize voices that get lost in the din, or even silenced by stigma and discrimination. There will always be a push from the science and medical community to produce better medication and to test and treat more people, which is great and obviously very important. But I think from the research perspective, there is value in the “real world” in recognizing that we have a lot of room to grow in learning how we can dismantle stigma and shape a better world for people living with HIV.
How do you engage the community in your work?
I think this is a tough question because—at least for me personally—I feel that as soon as I answer this question in an affirmative sort of way, I am abandoning a commitment to grow that forces me to realise that I never really succeed in perfectly engaging the community! That being said, in my experiences in my work both with HCV and HIV, I have seen my role as working to make space to enable people with lived experience to share their stories, and feel safe and comfortable doing so. I have had the opportunity to do so much learning from peers I have worked and interacted with, and that has driven me to want to continue that approach in everything I do.
On my last project working with HCV, we had a team of peer assessors. Their thoughts and approaches shed so much light on where I needed to be better in my own processes and make space. I think a big piece of this is the willingness to be open and vulnerable—to try to step outside of the “professionalism” box and really listen. Everyday I have conversations with peers and colleagues that speak to how I need to grow and adapt to make the work that I am doing (and really, who I am in respect to the community) better. Engaging community is a learning journey, but I am committed to seeing it through.
If you had unlimited funds, which areas of research would you invest in?
I think some of my work has led to me having a bit of a bias here! I think working to build up rural communities with programming would certainly be at the top of my mind. We could do so much if we could find and fund ways to link rural communities into care more effectively. There is a tendency in this work to be Vancouver-centric — to focus on where people congregate and pour our resources into that. And that hasn’t been working—not from the research perspective or from the perspective of people in rural communities. So tackling that head-on would be a priority for me.
I also think I would love to spread the love and hire more youth to work in the sector. I think there are a lot of brilliant minds that haven’t had a lot of opportunity to express themselves because they are shut out (by student debt, by unfair hiring practices… the list goes on) from participating. Creating more roles that are open, consistently funded, and include an emphasis on capacity building would be the dream. Not to sound like a cliché, but the youth are our future! We need to invest in them.
If you were able to choose, what is the natural talent you’d like to be gifted with?
Perhaps the ability to learn a skill immediately, with very little effort! I must admit that I am sometimes impatient, and would love to just immediately speak another language or be able to run a marathon. A few months of having immediate expertise and you could be a superhero.