This article is part of a monthly series celebrating Brock’s rich history of community engagement and enduring commitment to the mutual exchange of knowledge and resources within the Niagara community and beyond. To read other stories in the series, visit The Brock News.

Brock Assistant Professor of Psychology Scott Neufeld’s research on stigma, substance use and homelessness is rooted in the meaningful involvement of people with lived and living experience (PWLLE).

As a PhD student, he worked with PWLLE in the Downtown Eastside neighbourhood of Vancouver to co-develop guidelines for ethical research in marginalized communities. Today, he is the co-chair of Niagara Advocates with Lived/Living Experience (NALE), a group that grew out of community collaborations and Brock research.

When he first arrived in Niagara, Neufeld connected with the Overdose Prevention Education Network of Niagara (OPENN), which included several local individuals and organizations involved in harm reduction and treatment for people who use drugs. He soon became chair of an OPENN working group focused on how the network could meaningfully engage with PWLLE of substance use in Niagara.

“Our working group wanted to learn more from people with lived and living experience about what they would want to share with service providers, with the public and with their peers,” he says.

Neufeld secured funding from the Council for Research in the Social Sciences (CRISS) at Brock and approval from the Research Ethics Board to conduct a local survey, which was designed collectively by the working group and distributed by Positive Living Niagara, Community Addiction Services of Niagara and the John Howard Society.

Among other things, the survey responses indicated a strong interest in an advocacy group, with 45 per cent of respondents saying that they would be interested in a group advocating for PWLLE.

The research findings were shared at various community events, including a Peer Symposium organized by Quest Community Health Centre (Quest CHC) in March 2023. There, Neufeld met Keanna Schuster, who was then working as a Peer Support Navigator with Lived and Living Experience with Mental Health, Addictions and Homelessness.

Their discussions about forming a mutual support group for PWLLE working in peer-support roles eventually grew to include broader advocacy for PWLLE of criminalized substance use in Niagara — and NALE was born.

Now a Youth Mental Health Outreach Worker with Quest CHC, Schuster co-chaired NALE with Neufeld for the past six months. In that time, she says the group has pinned down its focus and gotten to work, taking part in community events and collaborating with other community organizations to distribute food and emergency tent donations.

“One of the first big things was on the night of Jelly Roll’s concert in St. Catharines —because he’s an advocate for harm reduction — we held up bristol boards with statistics on overdoses and substance use within the Niagara region,” says Schuster. “That caught attention and ended up going in the local papers.”

In the spring, working with the Ozanam Centre Soup Kitchen, NALE co-hosted an event with a free meal to help raise local awareness about NALE.

“We wanted to share some of what we learned from the survey and let people know that if somebody uses drugs or experiences poverty or homelessness in this neighborhood and feels isolated, NALE is here,” says Neufeld.

The group also welcomes students from Neufeld’s Brock-based Community Action Research and Ethics (CARE) Collective.

“One big focus of the CARE Collective’s research is how people experience or navigate or resist discrimination and stigma around substance use and homelessness,” says Neufeld. “When students don’t have those lived experiences, they have a chance to throw out an idea about their research questions and get useful feedback from people in NALE about whether it’s a good direction to look in or maybe it misses the point.”

While not a formal research partnership, it’s a mutually beneficial relationship that is a great example of what community-based research can look like, according to Neufeld.

As NALE gathers steam, both Neufeld and Schuster hope more people will engage with the group, which Schuster says will benefit from strength in numbers as well as a diversity of voices and suggestions for future work.

“There’s no qualification for membership — if you want to be there for lived and living experience, supports around the homelessness sector, mental health and addictions, please come out,” she says. “And if there’s something else that we could be doing in the community that we’re not already doing, we ask people to please bring that forward, too.”