By Sue Tiffin

Sandra McNeil has been studying substance use recovery and stigma in rural communities as part of her work toward a PhD, and found that what she has learned from residents living in rural areas is important to share.

McNeil said she was working as a therapist at a community addiction agency and was finding that despite the presence of mental health initiatives and anti-stigma campaigns, the population she was working with who were identifying with substance use issues were not experiencing reduced stigma.

“And so, it just caused me to ask why,” said McNeil. “Why does it seem that people, I mean, stigma is a problem for mental health and substance use for sure, but why does it seem to be acknowledged that we can’t stigmatize against people like that because it’s an illness, whereas people that have substance use issues, the stigma was still alive and well and operating.”

When she began looking into the area of recovery, she said recovery from substance use and recovery from mental health have two different understandings based on notions of recovery in government, media, and by professionals.

“Recovery from substance use was historically about abstinence, or at least, tapering down until people get to abstinence, whereas recovery in the mental health field was focused on beliefs that people deserve to be treated with dignity and respect regardless of their mental health and substance use, to be experts of their own lives, in terms of what they need or don’t need, to participate in shared decision making and have access to resources like medical care, income support, housing, employment, transportation, you know, all of those things,” said McNeil. “That was kind of the difference in those two understandings of recovery.”

McNeil has lived in a rural community for more than 30 years, and works in rural communities as well, but said there is a shortage of research on substance use, recovery and stigma conducted in rural areas. She set out to change that, with a study into how we are understanding recovery.

First, she examined two federal Canadian documents that discuss recovery in Canada: 2006’s Out of the shadows at last: Transforming mental health, mental illness, and addiction services in Canada. Final Report of the Senate Standing Committee on Social Affairs, Science and Technology and 2015’s Guidelines for recovery-oriented practice: Hope. Dignity. Inclusion.

“What I found was that people with substance use issues were often not mentioned in these recovery documents, and more attention was focused on mental health, even though we’re trying to understand substance use as a mental health condition,” she said. “So that was one of the first things. The second thing I noticed is that when people with substance use issues were referred to, they were referred to with negative language – damaged, inmates, junkies. Often referred to as being vulnerable and at-risk. The other thing I noticed is that some of our social groups – women, older adults, youth, LGBTQ, racialized people, they were described as being especially at-risk. That’s not to say they’re not, but it certainly does kind of categorize them, which is what I was noticing.”

Very little was said, McNeil noted, about people living in rural areas, “so it’s almost like we’re invisible.”

“And then they had this description of what recovery was,” she said. “So even though there wasn’t supposed to be any one right way of recovery, the documents are permeated with this description of this ideal person in recovery, and that person doesn’t use substances, they get help from their family/friends/peer supports and professionals so they can stop using, they are responsible, they make healthy choices, they contribute to society, whether they volunteer or have a job. They have a car and a house and nice stuff, belongings. There exists this construction of the ideal recovery person. They have supportive family, healthy relationships and I want to be really, really clear, there’s nothing inherently wrong with that, it does work for a lot of people, but one of the problems is that it doesn’t work for everybody. And those are the people that end up experiencing stigma and those negative stereotypes continue to be perpetuated, because there are a number of people that just don’t fit.”

The second part of her study involved speaking to people living with substance use issues in rural areas to better understand how substance use recovery and stigma affect people’s lives in those rural areas, leading to a recruitment campaign looking for people in City of Kawartha Lakes and Haliburton County with past or present substance use issues to participate in a voluntary and confidential one-on-one interview.

The response, said McNeil, was incredible.

Forty men and women – roughly half from Haliburton County and half from City of Kawartha Lakes – ranging in age from 17 to 72, responded to McNeil’s study recruitment efforts. She thinks it’s significant that 85 per cent of those respondents had annual income less than $30,000, and also that the majority had lived in a city at one point, noting their responses were reinforced in that they were able to compare their experiences to life in an urban area. She credits “overwhelming support and enthusiasm from community and health care providers in both City of Kawartha Lakes and Haliburton County” in helping to complete her recruitment, and the participants themselves for reaching out.

“I was just thrilled with how many people were willing to speak with me,” she said.

In interviews that took place from January to May 2019, she asked people about the notion of recovery, what it means to them, and then about stigma.

“Under the category of recovery, many, many people talked about losing everything because of their substance use, so that points back to jobs, homes, cars, families, possessions, relationships, even their identity and their self-esteem,” said McNeil. “To them, recovery meant getting these things back. And for me that begged the question, so why do they have to lose those things in the first place?”

Many people agreed, said McNeil, that that is what recovery is – getting those things back.

“And they said that recovery from substance use also means not using, getting help, making good choices, holding a job, being a responsible citizen who makes positive contributions to society, you know all of those things from the documents were also in the participant’s narratives, so it is valid, but … they also said, those things are not that simple.”

Study participants also spoke to harm reduction – that recovery can still include using substances while trying to reduce harm.

“They argued that healthy choices are often impossible, when they are excluded from employment, volunteering, parenting, whatever it is that they’re being restricted from,” said McNeil. “They gave examples of being stigmatized by healthcare providers, employers, landlords, because of – not only their substance use, but their ability, whether it was mental or physical, their appearance, their weight, their age, and whether they had a fixed address. And they said that family, friends and professionals who were ‘supposed’ to be supportive, often blamed them and shamed them. And it showed that people with substance use issues are often stigmatized and excluded if they don’t meet this ideal recovery identity. And at the same time, they can’t meet the ideal recovery identity when they’re being stigmatized and excluded from society. And also, on top of that, this ideal recovery – these norms, if you will, may not be desirable for everybody. And that’s an element too.”

McNeil said she found that the “recovery as the documents constructed was validated by the participants, but it was also resisted.”

Some participants compared their substance use to a physical illness, noting that illnesses such as cancer aren’t stigmatized in the same way and that illness in general shouldn’t be stigmatized.

Some participants also challenged stigma, in healthcare systems, child protection and insurance companies, by making formal complaints and getting legal supports, sometimes to fight discrimination.

“They really took it to certain levels to fight against stigma, and they had incredible insight to question the role of media, and how it portrays alcohol in positive ways and how it describes maybe celebrity overdoses as being accidental in a more glamorous way than they would talk about people that just overdosed in the community on the street,” said McNeil. “So incredible insight and questions on some of the policies that we have, that legalize some drugs but don’t legalize others, and the methadone clinics that financially benefit from opioid addiction and most of the participants, almost all of them, took personal responsibility for their substance use and recovery but they also highlighted the responsibility of medical, pharmaceutical and government systems.”

When the interviews were conducted, McNeil said she was “blown away” by the openness of participants and their comfort in sharing.

“I wonder if it speaks to the importance of being heard and having someone actually take the time to listen,” she said.

McNeil said though we know so much, actually putting some of it into practice can be difficult.

“I really believe that we have to think about substance use stigma in terms of changing our own attitudes and beliefs and not focusing on changing the people with substance use issues,” she said. “That’s kind of my position. I know it’s not the only position, and there’s a number of different interventions that have to work in collaboration with each other, but my position is that we have to understand how power operates in society, and that there are people in positions of power, whether it’s the government or media or doctors, that construct a certain type of recovery for a certain type of person. And, that construction kind of permeates through society and we all start to believe that it’s true, we just assume it. But there’s many, many people with substance issues that don’t fit that ideal and so they get stigmatized.”

To change this, McNeil said we need to listen carefully, and question our own assumptions rather than focusing on “fixing” people with substance use issues.

“It was incredibly eye-opening to me, to really, really listen and understand how complex this is and make a commitment to – if that’s what you believe you need to do – make a commitment to join that fight against stigma, support them in their human rights and support an equitable standard of living,” she said. A basic income program is a good example of that, she said, as is recognizing that it is society’s choice to choose how to perceive this issue, and how to respond to it.

With the research done and articles almost submitted for publication, McNeil now begins the process of dissemination, and has plans to present some of her findings to community agencies, or the community itself through in-person presentations – when possible – or perhaps through a short film that makes the information accessible within the community and beyond.