Jillian Watkins has worked for over 15 years across a variety of positions in health and social support settings, including not-for-profit organizations, academia, and consulting in Canada and the US. Her previous work in the HIV sector includes a role as Interim Executive Director at HIV/AIDS Resources and Community Health (ARCH), a not-for-profit organization supporting people living with and at risk for HIV in Guelph Ontario.
This interview has been condensed and edited for clarity.
What was one of your favorite things about the services that you have?
Moyo has a real commitment to engaging and involving people with lived experience. We support people who live with HIV, we hire people who live with HIV, we invite people who live with HIV to help us design programs, sit on committees, and support our events. Their experience means so much to our clients – it means that they can connect on a level that someone without HIV can’t connect on, and the client doesn’t have to explain as much about themselves or their circumstances, because the person that’s supporting them gets it straight off the bat. Similarly, we do a lot of work with LGBTQ folks and we have staff who are queer, and can create a sense of comfort through shared understanding. We also support and hire a lot of African Caribbean and black folks, and invite their support in our program development. Because when you come to a new place to receive services, and you see someone who looks like you and has the same experiences, you have a level of comfort and safety. All these things mean we can get past the initial barriers and challenges that people might have in reaching out for support, and instead get to what is really needed for that person.
What types of needs do your clients have?
We have a pretty broad range of folks that we support as well as services that we provide in helping people get connected to health care. So if they’re newly diagnosed with HIV, or if they are at risk of HIV, we work with them to find primary care or a specialist if that’s what they need. A lot of people that we support are not familiar with the system and may not be familiar with their own rights. We try to take a whole-person approach to thinking about everything that someone needs to keep healthy. If it’s somebody who uses drugs regularly, we make sure that they have regular access to clean drug-taking equipment, that they and the people around them have Naloxone and know how to administer it, and that they feel comfortable reaching out to us. We try to prevent the risk of people acquiring HIV or STBBIs from sharing drug-taking equipment. We do education with people around how to use drugs safely, and how to not use drugs alone. We go to locations where we know people might be using drugs and might be needing support.
What’s something that you love doing in your job every day?
I work with an amazing group of people. Everyone, and I think this is sector-wide – and probably like all the organizations that are a part of the Metamorphosis Network – people are passionate, and that’s why they’re doing this work. There’s something really wonderful about spending each day with people who have shared values, care about advocacy, and care about supporting the populations that we support. Even in the midst of devastating funding cuts and loss of services that we’re no longer able to provide, there’s still a joy in sharing these experiences with people who are passionate. No day is boring, that’s for sure. It’s a really dynamic, interesting place to work.
How does your organization prioritize a “people first” or “bottom up” approach?
Our efforts to embed people with lived experience in the development of programs and the daily functioning of programs. You can’t make assumptions about the needs of a community, even if you work regularly with that community. You need them to share how receiving those services feels and how we can ensure that we create safe, comfortable spaces so people will use our services. If we’re talking about queer folks, we want to know what are the most pressing concerns and what are the recent experiences people have had in seeking out health care or social services. What can we do to reduce stigma for the community, not just within Moyo, but with other service providers that are providing services to our clients? How can we do that education? It’s kind of like non-stop education. We can’t ever decide we have a full enough understanding of this community, because needs are constantly evolving and changing. It’s about constantly making those efforts to engage with people and involve people. It’s great to have people come in and do focus groups or share their experiences of your services, but they should also be providing the services alongside you, so that you can ensure that you’re really reflecting what the community needs.
What are some of the challenges your clients face?
Lots of folks experience stigma. People experience stigma if they have HIV, if they’re queer, if they’re African, Caribbean and black, if they’re Indigenous. There’s so many reasons why someone might experience stigma, even from within their own communities. For example, some queer folks in Peel won’t access queer specific services because they fear the discrimination they may experience. On other hand, some queer folks would be super happy to access services in Peel, but they can’t find a doctor that’s willing to prescribe PrEP. They get pushback, or physicians saying “Oh, that’s not something we do.” And so they end up going to downtown Toronto, where there’s so many services that are really targeted and specific for folks. We’re doing our best to meet the needs of the community and even doing education with service providers. Maybe they’re not even aware of the most up-to-date information on HIV meds, and we can do some education around that, or bring in folks to do some of that education. There’s so many different ways that we try to expand services and reduce stigma.
Who seeks services at Moyo?
I don’t know if I know how to describe just one person, it’s so varied. We might have a gay man who’s had a recent exposure and is calling us to say, “What do I do? Where can I go? Who can I see?” We can help and we can get them connected and have conversations with them about getting on PrEP. We can make them feel better. Explain when they can get tested, what the timeframes are, like – all those sorts of things. We might have a young mom who has HIV who wants support with breastfeeding, or wants to know what her options are, or maybe she doesn’t have a doctor that she trusts or that she’s getting good advice from. We might have someone who’s suffering from mental health, who wants to build connections and community and are interested in some of our social programs. We might have somebody who uses drugs, who needs information about how to use safely, or wants to talk to a health care provider that isn’t going to judge them and just dismiss them. Maybe they need care and they’re afraid to go to the emergency department because they’ve been so stigmatized every time they go there. There’s so many assumptions about people for so many different reasons. They can come to Moyo and find a non judgmental person that can do their best to help them.
What is something that would surprise people about the sector?
There’s so many misconceptions about HIV. Some people still think like they did in the 80s and 90s: it means that you’re going to be sick for a really long time, you’re going to die early, you’re not going to be able to work, you’re not going to be able to have children, or you’re not going to be able to have a long term partner. None of those things are true. HIV is a chronic condition and you can get on medication and live your life, just as anyone else would including having a partnership where you don’t risk giving HIV to your partner, having children where you don’t risk giving HIV to your children, being able to work wherever you want because you are not sick all the time, every day. There’s so many misconceptions about the needs of people that we support, and what it means to have HIV. I think it would probably surprise some people to know that the way they’re thinking about it is really outdated.
What brought you to this work?
I spent about 10 years in Toronto, at the University of Toronto, doing research and evaluation on public policy related to people with chronic conditions. Then, I moved to New York, and I started working at the HIV Center for Clinical and Behavioral Studies at Columbia University. There I was running clinical trials focused on HIV prevention, mostly with young people in the criminal justice system and was really embedded in HIV prevention work. From there, I moved to work as an interim Executive Director at another HIV organization where I started to build a lot of connections in the sector in Ontario. My whole career, I’ve focused on how to prevent barriers for people to access health care, how to ensure that people are getting the health and social care that they need, especially people who, for lots of different reasons, have barriers to accessing care or vulnerabilities. So getting involved in the HIV sector made a lot of sense, and it’s a really fantastic sector to work in. It’s a sector that is really rooted in advocacy, which is also something that I’ve been really dedicated to throughout my career.
Speaking of health policy, what are you thinking about amid the federal election?
Our healthcare system is in a massive crisis. There is not enough care for people who need it. Our systems are so stretched right now, there’s not enough primary care. There’s not enough capacity at our hospitals. The folks who need care are waiting. If you need mental health support you may be waiting for years. You name it, it’s a problem right now. Sure, health care is provincial, but the federal government funds provinces to do health care and can set policies and priorities. And there’s huge concerns about the privatization creep in Ontario right now – and maybe creep is too small a word. We know that directly will not result in a system that will support our clients. We also have so many concerns about the rhetoric around people who use drugs. I would love to see conversations about how we can go back to looking at evidence to inform the decisions that we’re making around all healthcare services, and in particular harm reduction services. Let’s talk about housing. Let’s talk about all of the clients that we support that don’t have access to affordable housing, access to food and nutrition. People who are new to our country are needing income support or on disability, and there is so many needs to be met.
