Heads Up! Community Mental Health Podcast

STIGMA: From Stereotyping & Discrimination to Compassion & Inclusion

Heads Up! Community Mental Health Podcast
STIGMA: From Stereotyping & Discrimination to Compassion & Inclusion
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Summary of Reviews

SUMMARY

More than half of the seven million Canadians who face mental health challenges every year, won’t seek help for fear of being stereotyped and discriminated against. To help unravel the complexities of stigma that often bind people with mental illness, we’re joined by Samaria Nancy Cardinal, a Metis woman whose battle with intergenerational trauma and misdiagnosed mental illnesses left her homeless, suicidal, and steeped in self-stigma. Now, twenty years later, she’s studying social work, running a business, and advocating for Indigenous people in Canada’s health care system. Dr. Stephanie Knaak, a researcher with the Mental Health Commission of Canada, brings science to the mix and talks about different types of stigma, Canadian efforts to reduce stigma, and how we all can learn to recognize and purge our own biases about mental illness. And yes, we all have them!

 

TAKEAWAYS

This podcast will help you understand:

  • Mental health stigma and its impacts on individuals, families, workplaces, and communities
  • Social and economic impacts of stigma on communities and the country as a whole
  • Structural (institutional) stigma, its impacts, and opportunities for systemic change
  • Barriers to reducing structural stigma
  • Key priorities for disrupting and dismantling mental illness-related stigma in health care environments
  • Role of government in reducing stigma
  • Public (external) stigma, its impacts, and opportunities for cultural change
  • Self (internal) stigma, its impacts, and opportunities for personal change
  • Intergenerational trauma and stigma experienced by Indigenous people
  • The role of culture in healing
  • Canadian efforts to reduce stigma
  • Role of the Mental Health Commission of Canada and Open Minds program
  • Role of lived experience in the fight against stigma
  • Link between systemic racism and stigma
  • How stigma benefits those in power
  • Role of personal identity in recognizing and healing from stigma

 

SPONSOR

Fresh Outlook Foundation

The Social Planning & Research Council of British Columbia (SPARC BC) is a leader in applied social research, social policy analysis, and community development approaches to social justice. Lorraine Copas and her great team support the council’s 16,000 members, and work with communities to build a just and healthy society for all. THANK YOU for supporting the HEADS UP! Community Mental Health Summit and the HEADS UP! Community Mental Health Podcast.

 

RESOURCES

 

GUESTS 

Samaria Nancy Cardinal

Heads Up! Community Mental Health PodcastSamaria Nancy Cardinal is an Indigenous woman of Blackfoot-Metis heritage. Trauma, mental health, addictions, and living on the street were a large part of her life. She now has faced all her challenges and walks a different path in life.

Samaria has experience working in the disability, mental health, and addictions fields. She owns her own business and is now attending University in a Social Work program and working on a research project for the University of Calgary, Cummings School of Medicine. At the end of the project, a video teaching series will be available to medical students to learn about Indigenous views and living with stigma.

Samaria is a patient advocate for Patients for Patient Safety Canada, a new member of the Mental Health Commission of Canada, contractor for the University of Calgary, Cummings School of Medicine, Indigenous peer mentor for Mount Royal University, and board member of Metis Local 87 in Calgary, Alberta. 

Email: samaria@mysticalmetis.ca

Website: www.mysticalmetis.ca

Facebook:  www.facebook.com/MysticalMetis

LinkedIn: www.linkedin.com/in/samaria-nancy-cardinal-67b03873

 

Dr. Stephanie Knaak

Heads Up! Community Mental Health PodcastDr. Stephanie Knaak holds a doctorate in Sociology from the University of Alberta. At the University of Calgary, she is an assistant adjunct professor and an associate member of the Mathison Centre for Mental Health Research & Education. She is also an adjunct professor at the University of Manitoba, a senior consultant researcher with the Mental Health Commission of Canada, and principal of INSIGHT Research & Consulting.

Stephanie’s research specialties include mental illness and substance-use related stigma, Canada’s opioid crisis, and workplace mental health. She has published more than 50 academic articles and research reports on these topics. Her current research focusses especially on mental illness and substance use-related stigma within healthcare systems.

Email: sknaak@mentalhealthcommission.ca

Phone: 250-344-8430

Website: www.stephanieknaak.ca

Twitter: www.twitter.com/knaak_stephanie

 

HOST

Jo de Vries is a community education and engagement specialist with 30 years of experience helping local governments in British Columbia connect with their citizens about important sustainability issues. In 2006, she established the Fresh Outlook Foundation (FOF) to “inspire community conversations for sustainable change.” FOF’s highly acclaimed events include Building SustainABLE Communities conferences, Reel Change SustainAbility Film Fest, Eco-Blast Kids’ Camps, CommUnity Innovation Lab, Breakfast of Champions, and Women 4 SustainAbility. FOF’s newest ventures are the HEADS UP! Community Mental Health Summit and HEADS UP! Community Mental Health Podcast.

Website: Fresh Outlook Foundation

Phone: 250-300-8797

 

PLAY IT FORWARD

The move toward compassion becomes possible as more people learn about stigma and its social, cultural, spiritual, and economic implications. To that end, please share this podcast with anyone who has an interest or stake in the future of mental health for individuals, families, workplaces, or communities.

 

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Stephanie Knaak, Samaria Nancy Cardinal Interview Transcript

You can download a pdf of the transcript here. The entire transcript is also found below:

RICK  0:10

Welcome to the HEADS UP! Community Mental Health Podcast. Join our host Jo de Vries with the Fresh Outlook Foundation as she combines science with storytelling to explore a variety of mental health issues with people from all walks of life. Stay tuned!

JO  0:32

Hey, Jo here. Thanks for joining me with my two guests as we unravel the complex and nasty knots of stigma that often face people with mental health challenges, Big hugs to the great folks at the Social Planning and Research Council of British Columbia, and the Central Okanagan Foundation, for making this vital conversation possible.

Our first guest is a remarkable Indigenous woman who's battled with intergenerational trauma and misdiagnosed mental illnesses that left her steeped in self-stigma, and sometimes homeless and suicidal. Now, 20 years later, she's studying social work at university, running a business, and advocating for Indigenous people in Canada's healthcare system. Also joining us as a stigma researcher with the Mental Health Commission of Canada, who will help us understand not only the different types of stigma, but also how we can update policies, transform cultures, and educate workers in the mental healthcare system.

But before meeting these amazing women, let's learn more about stigma from my researcher. Rick, I know it's a huge topic, but I'm hoping you can boil it down to some basics for us.

RICK  1:51

One in five Canadians experience a mental health challenge every year. But despite how common they are, mental health concerns continue to be met with widespread stigma in families, workplaces, schools, hospitals, and other organizations and communities across the country. Stigma is so pervasive that every year more than three and a half million Canadians with mental health challenges won't seek help. They fear being labeled or discriminated against. Some say that living with stigma is worse than the illness itself.

JO  2:26

In simple terms, what is stigma?

RICK  2:28

A 2019 report by Canada's chief public health officer notes that stigma begins with the labeling of differences and negative stereotyping. These create a separation between "us" and "them." Stigmatized people are devalued and often subjected to discrimination because of what others believe about them. For example, if you buy into common stigmas, you might not hire or rent an apartment to someone with mental health challenges, because you think he or she might be lazy, unreliable, and/or unpredictable. 

JO  3:03

Thanks for that Rick… although very disturbing information.

I'm thrilled to introduce our first guest, Samaria Nancy Cardinal, who knows better than most the damage caused by stigma of all stripes. She also knows firsthand the opportunities that exist when stigma is battled head on. Thanks so much for joining us, Samaria. 

SAMARIA  3:31

You're welcome. Thank you so much for having me.

JO  3:34

You have a very powerful story to share, starting from when you were a youngster. Take us back to that time…

SAMARIA  3:42

I come from an Indigenous family and my father was in residential school. He had eight brothers and sisters, and it was the older three that went to residential school. As a result, he was in there for seven years, and it left him with a lot of psychological scars. So, he did not know how to parent... he did the best he could. And he had anger issues. He didn't know how to treat women. He didn't know how to parent and all this was passed to me.

At 13 years old I ran away from home because I could not tolerate my life at home… all the abuse that I was getting. I lived on the streets for a while and it was very hard. When I was 40 I had a child, and as a result of having the child I had postpartum depression. I ended up in the hospital, and while in the hospital they diagnosed me with bipolar one. That proceeded to be quite a mess because I ended up 15 years in the system vastly over-medicated on multiple drugs. I was given shock treatment for years bi-weekly. I ended up losing my driver's license because I couldn't drive because I was so medicated I had to take HandiBus. I was put on a leash. I lived in Calgary housing… I basically had no life. In the end, I also got addicted to drugs because I had no hope, or no life. And I got addicted to crack cocaine.

It all accumulated with me living under a bridge in Calgary… funny that the bridge is now called reconciliation bridge, which is kind of strange. But the night it all changed for me, as I was sitting there on a urine-soaked mattress, it was probably 30 degrees below. I had no coat… I was freezing. I had reached out to the system… they weren't helping me. So, it was either kill myself now or totally change my life if I could. Something gave me the desire to live, and I walked out from that bridge.

And after walking out from that bridge, I fired the team at the hospital that was keeping me drugged up and not doing anything for me. That was the big change in my life. When I did fire that team, they actually walked me out of the Foothills Hospital with security. That was quite demeaning, but it was one of the most powerful days of my life. I found out after that I never had bipolar... I have PTSD from all the trauma, the intergenerational trauma, everything that I've been through in my life. I was never given counseling or given help for that. So, I went on my own and was seeking help [from] traditional medicine.

I found a psychiatrist, that was amazing. He's not into a lot of medication, and he helped me to get off the medication I was on. That took two full years. That was very difficult. With the help of that psychiatrist, my husband and my daughter, they were my support system for this, and they helped pull me out of it. It was extremely hard. And I went through periods of great anger over what was done to me by the system. It was very difficult.

For years, I lived in the state of anger about what was done to me and why I didn't get the help I needed and why my life was destroyed. But I'm past that anger now because I realized that it wasn't just me, it was the system. The doctors did not understand me, they did not know anything about intergenerational trauma at the time. In my social work class, I just watched a video two days ago about how the pharmaceutical companies were pushing people to be diagnosed with bipolar so they could sell more of their drugs. It was extremely triggering to watch that video, but it affirmed everything that I thought had been happening at the time.

I've totally changed my life. I see myself as an empowered, resilient woman. I can overcome anything, and I use what I have been through to help teach and to help others that have gone through similar circumstances.

JO  8:31

Thank you so much for sharing, Samaria. Your story is truly a testament to the resilience of the human spirit. Given your harrowing experiences, where did that strength to heal come from?

SAMARIA  8:46

Basically, it came from my support system of my daughter and my husband. I looked at my daughter, and she has gone through so much. She was raised by a mother that wasn't there. I sat on the couch and drooled. And the time I wasn't drooling I was on drugs. I thought, oh my God, I can't have my daughter living like I did. I need to change. I need to find a way to become better, because right now I'm not living a life and I'm affecting somebody else like I was affected. So, she was a big part of my drive to change. And also, my husband is an incredible man. He stood by me and held my hand, and when I was getting off the medication, he would cut my pills for me every day a little bit smaller. And he held my hand as I was going through the withdrawals. I couldn't have done it without them.

JO  9:48

And what are you seeing are the long-term benefits of digging that deep?

SAMARIA  9:53

I now have an awareness of what happened to me. I have an awareness of what I need to change... what needs to be changed in our systems. I feel that everything that I've gone through is for a reason. I'm still alive. I can still talk after years of shock treatment and overmedication. I feel that there's a reason that I'm still here. And I feel my reason is to help inform and educate people about this.

JO  10:20

You talked about your intergenerational trauma. As an Indigenous woman, can you help us better understand that trauma, and the effects it has on your people, individually and collectively?

SAMARIA  10:35

Intergenerational trauma goes into the area of epigenetics. When people go through extreme trauma, what happens is their genes actually change when they're passed on to their children. Indigenous people, they were starved… they were used in medical experiments… they were sterilized… they were told that they were savages. When they moved them on reserves, some of them started doing agriculture, but then the settlers didn't want the Indigenous people to get in on the agriculture, so then they banned them from selling their stuff in markets. It was like everything that Canadian society could do to demean the Indigenous people happened… they just wanted them gone. We use the slogan... “we are still here.” We're not going anywhere. We're gonna survive.

These residential schools the kids went in, they cut their braids. Long hair to Indigenous people is very, very important. It's part of our spirituality. It's an extension of us. They cut the braids. The kids that went into the school, they were beaten if they didn't speak English, fingernails were pulled off, pins were stuck underneath their nails. They were locked in cages. They were beaten repeatedly. The girls were raped, and their babies were killed.

My aunt even told me the story of when she went into the residential school. The nuns put her in a bath, and they scrubbed her with lice control and everything because they said she was dirty and had lice. Well, she never came from the family like that. There's even an instance of a woman, she was in a residential school, and she was raped by the priest, and a nun took her baby to the basement to the furnace. And that poor woman had to watch her baby thrown in the furnace and be burnt alive. And whenever these children tried to get back to their parents, they were beaten. And a lot of them froze to death on roads or starved on the way trying to find their parents again.

And the parents did not have a choice. These people came to take their children, they couldn't even fight it. It was out of their hands. So, this is what happened. These kids are raised without parenting skills… with a high degree of trauma and stress. And they do not know how to have connections with their families. In the schools, a lot of them were given numbers, they weren't even allowed to talk to their brothers and sisters. They had nutritional issues. They weren't fed properly. So, this created a lot of issues.

So, you take an individual that has gone through all that, and then has children.  A lot of them suffered addiction problems because of being severely traumatized and having absolutely no self-esteem getting out of one of those places. They can't parent, they have no idea. They have attachment issues. They haven't been with their family, they lost their families for years, then that individual has children. And also, because they were raised in abuse, they tend to be abusive, so that gets blood on all the children. And this will occur and occur and occur until healing happens.

Once there is negative aspects and coping skills in one's life, it tends to get passed to the children until there's an intervention and things change. I was lucky because I was able to start working on these issues. So yes, I did pass a lot to my child, but I am working on it. I can see that she is not as affected as I am. And I have a grandson, and my daughter has learned how to parent, she does not have addiction issues… she's doing pretty good. So, I can look at my grandson and I can see he's a lot happier than either of us was. So, it is happening. But the thing is, it does take seven generations to get that out of the genes. So, this is going to be a very long process for Indigenous people.

JO  15:05

Those of us in other cultures have absolutely no way of comprehending what you went through and the extent of that intergenerational harm. But how can we support you through the process of healing from this kind of trauma?

SAMARIA  15:22

It's important to be not blaming. The thing is, there is a lot of homeless and addicted Indigenous people on the streets. And there's a good reason why, because of what society has done to them. When you're confronted with an individual like that, please remember what happened to them. They are not bad people. They are good people, and they have just been through a lot.

So, be open minded, be kind to your fellow human beings, and also watch your language. I hear people all the time saying, "Oh, look at all the drunk Indians," or, "Oh, they're the scum of the earth," or, "Why don't they get a job," or, "Oh my God, they get so much from the government," which they don't get. But remember that's a human being and society has done this to them. We need more programs, we need things in place, we need more understanding, instead of pointing a finger at somebody and saying that they're worthless. 

JO  16:28

As part of your healing scenario, I understand you reconciled with your father. How difficult was that, and why was forgiving him so important?

SAMARIA  16:40

It was really hard to reconcile with my father. For years, I had labeled him the monster in my life. He was the reason for all of my issues. It wasn't until a few years ago when I started learning about the residential school system, and what he went through...  he did the best he could with what he had, he tried to survive. It was a few years ago that I had been working on a lot of my issues. I wanted my daughter to forgive me for what I had put her through. And it was very important to me, but how could I expect my own daughter to forgive me when I viewed my own father as a monster and wouldn't forgive him. So, I decided to contact him. After many years, I had written him a letter and everything, all these things I was gonna say to him, and he got on the phone.

I realized he's done a lot of work on himself. He is not the same person... he is healed, too. But he was sick, too, and I've forgiven him, because now I know what he had to go through in his life… he didn't have support. So, in me forgiving him, and realizing that he's a human being that did the best he could with what he had, my daughter forgives me. And I'm at peace with that.

JO  18:29

Do you ever think about forgiving those of us who are non-natives for colonization, and systemic racism, and all of the horrible things that you've been subjected to?

SAMARIA  18:43

I am not angry with Canadians-at-large now. I have no anger. I believe there's nothing to forgive there. I'm angry at the system that created this. Many Canadians, they don't know the true history. They don't know what's going on, so I believe it's not really their fault. But I truly advise people to go out there and educate yourself on the true history of Canada. It's very ugly.

And it wasn't just Indigenous people that got it. Japanese Canadians were put in internment camps, black people coming up from the States... they were slaves. Chinese people that came in to work on the railroads, they were treated horrifically. And what about the Irish, that are even white? They were treated horrifically. So, Canada is not the wonderful country that it's brought out to be; there is a lot of horrific things that happened. And we need to all take it in and look at it, so none of that stuff happens again.

JO  19:56

How important has Indigenous culture been throughout your healing journey?

SAMARIA  20:02

It's been really important. At one point I threw it all away. I was very lucky in that I was raised in. When I was young I didn't realize what I was experiencing, and how lucky I was to be a part of that. But for many years, I ran away, and I pretended I was something else. People would ask me, "What's your ethnic background?" I’d say, “Oh, I'm Middle Eastern... oh, I'm this, or I'm not.” I was ashamed to be Indigenous. And so I hid it. And I didn't have anything to do with our culture.

And then a number of years ago I realized that to become better, and to feel better about myself, I couldn't hide who I was anymore. And I needed to embrace who I was as an individual. And I needed to embrace my culture and traditions again. So, I started going back to them, spending time with elders, receiving the teachings, going into ceremonies, learning pride, and who I was, and being around people that understood what I have been through as a human being. And it was extremely healing for me. And it has brought me to the place where I am today.

JO  21:19

When we were preparing for this, you talked about the medicine wheel. Can you share about that?

SAMARIA  21:25

The medicine wheel is all about balance in our lives… they also call it the sacred hoop of life. And it's a circle because it never begins and never ends… it is continuous. There's four quadrants in it, there's the spiritual quadrant, there is an emotional quadrant, there's a physical quadrant, and there's a mental quadrant. Each quadrant needs to be looked at and worked on. So, everything is in balance. And it can also be used as a healing tool because you can give it to somebody and you can ask: "How are you in each area? What do you do in each area to maintain balance? What area do you think is lacking? And what are you going to do to help that specific area get better and heal so that you are in balance?" Indigenous culture balances everything.

JO  22:27

Now, as you're moving along your healing continuum, have you found a balance between traditional and contemporary healing approaches? Or do you favor one over the other?

SAMARIA  22:40

I like to integrate everything. I think everything has its place and is important. I don't place one over the other. I like to look at all options and choose what is best for me.

JO  22:56

If you could make one recommendation to people who are now where you were back then, knowing that they would truly hear you, what would that be?

SAMARIA  23:07

You are not a bad person… there is a good person there. You have done nothing wrong. You are a product of what has happened in your life, and you can overcome it. Reach out, get rid of that pride that is keeping you from reaching your hand out, and go to the resources. Go to your mental health associations.

If you're Indigenous, go to a friendship center… go and reach out and seek help. There are people there that can help you. Don't do it alone. Because when you're by yourself, your brain is going to say all sorts of things to you that aren't real. You are a beautiful person. You are strong inside because, if you aren't strong inside, you still wouldn't be here. So, reach out to another individual. You can do it. I know you can. We can all live a wonderful, happy life. But you need to take the first step.

JO  24:14

And what would your suggestion be to the people who love those who are suffering?

SAMARIA  24:20

If you have somebody in your life that is suffering, the sad thing is you cannot make them get better. All you can do is be there for them and support them. Maybe offer them places to go... be there for them when they're going through the hard times. Don't judge, just be there... that is an individual that needs your support. That is an individual that needs to know that you love them. They are not their behaviors. They are the person that you love. Just stand by them, hold their hand, and show them that you're going to be there with every step of the way. And when they find the energy to reach out and change, always walk with them side by side. 

JO  25:07

Thanks so much for sharing, Samaria, your amazing insights.

JO  25:17

Before welcoming our next guest, I'd like to acknowledge our major HEADS UP! sponsor, the Social Planning and Research Council of BC... a leader in applied social research, social policy analysis, and community development approaches to social justice. SPARC BC's great team supports the council's 16,000 members and works with communities to build a just and healthy society for all. We can't thank you enough for supporting this podcast, and the HEADS UP! Community Mental Health Summit.

Let's talk about stigma itself. There are three types of stigma, structural stigma, public stigma and self-stigma. And to learn more about these and other important stigma-related issues I welcome our next guest, Dr. Stephanie Knack, a researcher with the Mental Health Commission of Canada. Hi, Stephanie!

STEPHANIE  26:14

Hi, Joanne... thank you so much for inviting me on today.

JO  26:19

Before we get into some definitions, and some more statistical information, how were you impacted by Samaria's story?

STEPHANIE  26:31

Oh, my goodness, I was sitting here listening to the story and, Samaria, the whole time I was thinking of how brave and how courageous you are. First of all, for being willing to share your story so openly. I'm extremely humbled by it and truly feel honored to be able to share this conversation with you. I think it's just extraordinary. There were many parts when I was hearing your story where my heart actually hurt. I could feel my heart physically hurting.

And the things that you experienced, and the stories that you told about the history of the experiences in the residential schools, I honestly have no words. And that's a difficult place to find yourself in. And I guess I heard, just being a stigma researcher, I hear those stories of stigma. Throughout your story, I saw so many examples of aspects of stigma that I've heard before from other people and their interactions with the healthcare system and their interactions with the world. And I guess that's why we're both on this podcast today, to really be able to highlight more about these issues of stigma, and how they impact people, and how we can try to combat it and battle it.

JO  27:44

Samaria's story perfectly exemplifies structural stigma, or systemic stigma, which is also called institutional stigma. Stephanie, you are a lead author for the commission's report called Combating Mental Illness & Substance Use-Related Structural Stigma in Healthcare. That's a big one. So, how is structural stigma defined in that report?

STEPHANIE  28:11

In that report we refer to structural stigma as the accumulated activities of organizations that deliberately or inadvertently create and maintain social inequities for people with lived or living experience of mental health challenges and substance-use problems. What we're talking about, and that's a little bit of academic-type definition, I suppose, but really what we're talking about are the formal and informal policies and practices of those public and private institutions and systems. So, we're talking about rules, we're talking about models of care, we're talking about healthcare policies, we're talking about organizational practices. And we're also talking about the informal practices of healthcare professionals and organizations.

We're also talking about organizational culture, right when we're talking about those accumulated activities. And we identify structural stigma as a particularly dangerous form of stigma because it represents unfairness and inequities that are embedded into the very fabric of our social institutions, into the very fabric of our organizational cultures, into the very ways of acting and thinking and doing.

JO  28:56

I know you have a personal story that will help people understand this type of stigma. Can you share that with us?

STEPHANIE  29:29

My story is in the context of a family member, and two different hospital experiences, where I accompanied her when she was experiencing a mental health crisis. Both times she visited the ER for a suicide attempt. The first incident was the first time that I was with a family member in the context of a crisis like this, so I didn't actually know what to expect. But when she arrived in the ER she was visited by a physician on call. She was visited not too long thereafter by a psychiatrist. A peer worker came by and checked in on her and left his card behind. She was also assigned to a family doctor who would come in and check in on her every day in the hospital. And she got all of those visits within, I'm going to say the first 12 hours.

So, in this context it was explained to us in crisis… the psychiatrists wanted to admit her as an impatient, but this was a hospital, it was very overcrowded, and they lacked resources. And the psychiatrist actually acknowledged that and said, “I'm sorry, we don't have a bed for you, you're going to be stuck in the emergency room for a couple of days.” But he also said, “I promise you are going to get good care.” And he said, “This is going to be uncomfortable for a couple of day, but we're going to find you a bed, and you will get very good care.” And that felt comforting. Me being the caregiver, the advocate there for this family member, it felt like a safe place. And that was my first experience in that kind of context.

The second incident was very different. Again, so in this context, she was sent to the ER of a regional hospital from our local community hospital, because the local hospital was worried about possible physical effects of her self-harm, and they didn't have the right specialists in our local community. So, they sent her to this other hospital into the ER. Now in this context… and I went along again, as the care provider… the care felt completely different.

She was provided care by the internist, who was looking after her physical health, the possible physical side effects of the suicide attempt, but no other doctor checked in. There was no peer worker... there was no psychiatrist who even was planning to come to see her. The nursing staff, they weren't rude, but they definitely didn't exude any kind of sense of caring or compassion. They were very efficient about their work… they came and checked her vitals every hour… and that was about it. We were kind of left with the feeling that we were an inconvenience.

I kept asking when she was going to see a psychiatrist… she was in crisis… she was not attached to any kind of mental healthcare in our home community. It was extremely distressing, and I was just seeing her fade away. And eventually psychiatrists did come because of the work of one nurse who decided to advocate for us, then she was able to get connected to more of the mental healthcare that she needed.

But what occurred to me is that the process of care [she received]... that was all systemic. Those two different experiences had something to do with decisions that were made behind the scenes as to… who the primary caregiver is when a case like this comes into the emergency room. How do we want to make this person feel? How are we going to be involved in this patient's [care], the types of inquiries they made, how they checked in? These were all kind of system decisions… they were part of the standard of care. And they couldn't have been more different in terms of the experiences that we had.

JO  32:58

That says to me you not only have a lack of proper policy and procedures, but the cultural inadequacies are hugely visible there.

STEPHANIE  33:09

Yes, and that's where you feel it. And that's the thing sometimes about structural stigma, or even stigma in general, is that you can't always pinpoint an exact problem in policy. But you can feel the stigma, right? You can feel when the compassion isn't there. You can feel when you're being judged, you can feel when you're being dismissed.

JO  33:34

If we pull back from that, from your individual experience, what's being done nationally in Canada to reduce structural stigma?

STEPHANIE  33:45

There's a few things I can speak to. I think there's a lot of great activity going on in the stigma-reduction world, a lot of very, very devoted organizations and agencies and people who are doing work in this area. What I can speak to you from the national level are a few things I'm familiar with. One that Rick mentioned at the beginning is Dr. Tam's report from last year that the public health agency put out specifically on the problems of stigma in the healthcare system. That report wasn't specific only to mental health, but it certainly highlighted mental health and substance use within the context of the report, and also started to really shine a light on stigma as an institutional problem in healthcare. And so, I think that was a really important report because it came from essentially the federal government.

In early 2020, before the COVID pandemic, the Public Health Agency of Canada also convened a roundtable with experts from across the country on the problem of drug use related structural stigma in the healthcare system. And the goal of that roundtable was to start to generate ideas on how to better measure or capture structural stigma. By actually counting something or measuring something drawing attention to it, you can actually see it better and start to address it. So, those are a couple of initiatives from the government side in terms of the Mental Health Commission of Canada, which is, again a national body. We are not a federal agency… we're a nonprofit agency. But at that level, the commission is also focused on mental health and substance use-related structural stigma, again, as it exists specific to the healthcare system. And we're now in the second year of our work in this area.

JO  35:22

Now I know you have a program called Opening Minds... can you bring us up to speed on that?

STEPHANIE  35:29

Opening Minds was actually the original name given to the anti-stigma initiative of the Mental Health Commission of Canada back in 2007, when the commission first basically came into creation. Stigma reduction has always been a key part of the work that the Mental Health Commission does, and Opening Minds was that initial initiative. It still exists. The strategy for Opening Minds was basically to take a targeted approach to stigma reduction. What it did was identify four key target groups to start with that were based on input from people with lived experience. And those four target groups were youth populations, workplaces, healthcare, and the news media. And then it developed strategies and research programs across each of those target areas.

Instead of reinventing the wheel and starting over, the aim was to work with community partners to identify initiatives and programs that were already happening in different communities and across different organizations. And then we wanted to evaluate them to see if they were actually reducing stigma, if they were improving attitudes, if they were improving behaviors, if they were increasing help-seeking. And then the idea was to take the ones that evaluated most successfully and help them scale up or replicate across the country in different contexts. That's the background of Opening Minds, and it's still doing all that great work.

The structural stigma file kind of originated out of that work, because a lot of the work that Opening Minds does is really targeting that level of public stigma. It's offering workshops and programs, or it's interested in partnering with workshops and programs that are really working at that individual or that interpersonal level, right. We're looking at changing individual behaviors and attitudes, and what we recognize through that work… that's really, really important work… but there's that whole other structural context. And there's the organizational culture context that isn't fully being addressed by offering just programming.

So, we kind of kept saying, "We've got to look at structures. We've got to look at structures." And so, the structural stigma initiative really kind of came out of that program. And the structural stigma, that work that we're doing, is kind of housed within the commission structure a little bit separately from Opening Minds. It's housed in the file of access to quality mental health services. So, it really gives us that focus that what we're trying to do with the structural stigma work is to break down those barriers to access and to quality care.

JO  38:14

What is your research telling you about the barriers to reducing structural stigma?

STEPHANIE  38:21

I think one is really just a true awareness and understanding of what structural stigma actually is, and how to spot it. In fact, our year-one research was really kind of a foundational knowledge-building research where we were trying to get a handle on the literature. What does the literature tell us about what structural stigma is? Where does it exist? How can we define it? How can we contextualize it, and what can be done about it? And we realized that even coming out of that it's such a big problem, it creeps into everything, right? From funding structures to individual behaviors.

Our year-two activities are really a lot about trying to put some kind of concrete examples and concrete ideas around this notion of structural stigma. And we're doing that by collecting personal stories. We're doing that by developing a training module that can be for decision-makers and health leaders. So, they can try to understand what we mean when we're talking about structural stigma, what it is, and how they can start looking for it, and how we can start tackling it. It's that awareness and understanding that's one of the barriers, one of the things we need to work on as a starting point.

The other thing that's a challenge is the fact that we are actually dealing with structures. We're dealing with policies, we're dealing with funding models, we're dealing with rules, we're dealing with laws, and we're dealing with culture change within organizations. These are really really big pieces… they don't change easily. So, you need leadership support. You need champions in decision-making positions, and you also need political will, especially when it comes to inequities in funding or inequities in the laws that pertain to people with mental health issues or substance-use issues. And that's not easy to come by.

JO 40:07

Is it too early to talk about best practices for the prevention of structural stigma?

STEPHANIE  40:13

Yes and no. I think we are early in our research journey… we are a little bit early to say with any great conclusiveness, but we also have a lot of previous research from our work with public stigma. And what comes up time and time again is the importance of having meaningful involvement of people with lived experience. It's absolutely key. And so, in terms of best practices about the prevention of structural stigma, or even about approaches to tackling structural stigma, if you can do nothing else, I would say start there.

When we talk about meaningful involvement of people with lived experience, it's involving them in policy decisions, involving them in policy reviews, involving them in training, embedding peer support into the delivery of care, giving peer workers a voice in decision-making. It's people with lived [and living] experience, who have experience in the system, they can see those inequities, and they can see the unfairness within those systems and policies and ways of doing things that decision-makers and care providers really can't always see. The more we involve and learn from the perspectives that people with lived experience [have], the more we can really foster that sense of shared humanity. And that's really how we're going to get around this problem of structural stigma.

JO 41:28

What do you see as the priorities for disrupting, hopefully, and eventually dismantling, mental illness-related structural stigma in healthcare environments?

STEPHANIE  41:40

I can speak a little bit to the report that we put out last year that summarized our year-one research activities. And in that report, we provided a framework for action that also very much built off of the framework that was put out by the Public Health Agency of Canada in their report. We really wanted to make sure that we weren't coming up with some new framework… we wanted to very much work with what they had already started. So, through all of the literature research, and the qualitative research we did in year one, the final report identified really seven main priority areas, or goals for tackling structural stigma. The first one was enhancing the training for healthcare staff. So, it's really getting the training they need to develop the competence and the confidence for working with people with mental health and substance-use problems.

JO 42:33

And the compassion, I would add. 

STEPHANIE  42:35

Absolutely, and the compassion. But one of the things that we've learned through previous work as well is that the tendency for social distance, or a desire for social distance, in clinical encounters can often come from anxiety on the part of health providers… that they don't know what to say, they don't know what to do, they don't feel properly skilled and trained. So, competencies is a part of it, for sure. But it's absolutely providing that training in the context of a shared-humanity framework, providing training and culturally safe and trauma-informed and violence-informed care that has to be there.

The second priority was measurement tools... to develop and implement audit tools, quality and performance measures, surveillance tools... so different ways of being able to measure inequities and quality-of-care issues related to people who are seeking help for mental health or substance-use problems.

The third [priority] was to adopt models of care that are recovery oriented or wellness oriented that prioritize harm reduction and that are inclusive... so, patient-centred, recovery-oriented, inclusive models of care.

The fourth one was about resource allocation, committing to equitable resource allocation for mental health and substance-use services and research. Because that's a big piece, too. It's not just about service delivery. Research is also dramatically underfunded, compared to other health disciplines. And so, you don't have the acceleration of knowledge in terms of treatment approaches, in terms of therapeutics, in terms of even understanding mental health and substance use in the context of trauma... the scenario I was talking about... and in the context of the social determinants of health.

The fifth priority is about fostering the meaningful inclusion of people with lived experience throughout the design and delivery of policy, health services, training, and research, and then building policies and practices that are stigma informed, and that [are] in line with what also enhances the provision of culturally safe and trauma- and violence- informed care.

And then the last one is really to focus on the culture of healthcare in the workplace. We learned a lot through our previous research that health-care culture is not a very friendly place for people working within it who might be experiencing mental health and substance-use problems. There's a lot of stigma within the institution of healthcare. So, focusing on that as well is a key priority.

JO  45:04

Just to mention again, the report that Stephanie is referring to is called Combating Mental Illness & Substance Use-Related Structural Stigma in Healthcare. And there's a link to that in our show notes if you'd like to learn more.

One last question, Stephanie, before we bring Samaria back. What is the role of government in enabling and encouraging reductions in structural stigma? 

STEPHANIE  45:33

I think they have a huge role to play, in part because they have that kind of leadership position, but also because they create legislation. And they have a huge role to play in allocating funding, not just funding for service delivery, but also for research, for fee codes, for physician remuneration. In Samaria's story, she talked about how her care for so many years was about basically being drugged up and not receiving any kind of counseling or other forms of psychosocial support. The fact that most psychotherapy isn't covered under provincial health plans as a medically necessary service for people with mental health diagnoses, that's ultimately a government decision. So, I think they have a huge role to play. 

JO  46:16

If government does have a huge role to play, how can we then work to build more compassionate cultures, given that governments are most often steeped in bureaucracy?

STEPHANIE  46:36

More compassionate culture comes from the actions and behaviors of everyday people. There's lots of tools and programs and approaches to care that already exist, and that are already being modeled in lots of different places. And people are practicing this. We have a trauma- and violence-informed understanding of what that looks like. We have guidelines and tools and trainings for providing culturally safe care. Mindful compassion is something that I'm seeing more and more in different trainings with health providers.

Now, shared humanity models are things that I'm seeing pop up here and there as well. There's definitely lots available that we can use to help us change our organizational cultures and change our culture of caring, if you will. And I think that is ultimately a ground-up momentum, where it starts in one organization or with one person in one health unit, and with champions it catches on and it just goes from there. It starts with the commitment of a few individuals.

JO  47:40

Samaria, when we were preparing for this episode, you talked about your own experiences with structural stigma, one of the big ones being labeling. Can you lay out for us how things could have been handled differently?

SAMARIA  47:57

My doctors were all from the Euro-Canadian culture, and I truly believe they did not know anything about my culture, or what Indigenous people have gone through... nobody even asked. I would have been open to informing them, but they didn't even ask. They never asked about my culture, or the trauma, or the issues that I had gone through. They assumed my issues, like regular Euro or immigrant patients, and never did any research.

When they diagnosed me with bipolar, that became who I was. And I was seen with that lens by every health professional, and it became an integral part of who I was. And as a result, I felt horrific because that's what I was, and then I wouldn't have a life, and I felt lost. And even when I would go to the hospital for non-mental health issues, like one time I went to the hospital, I was having like weird heart racing and stuff like this. I went into emergency, and the doctor didn't even listen to my chest, nothing. He just looked at me and he said, “Did you take your medication today?” And I looked at him and I knew exactly what he meant. And I just smiled at him, and said, “This has nothing to do with my mental health.” And I walked out of the emergency room. And I've had that happen a few times... that diagnosis.

I had to go see a doctor a couple weeks ago and she looked into my medical records, and that was brought up again. And I had to say, “No, that was a misdiagnosis that happened many years ago and that has nothing to do with this.” It tends to follow you around and people judge you. Healthcare professionals judge you the minute they see anything on it, and you're treated differently. There's a bias that covers every interaction, and it is really not nice to have to live with.

JO  50:11

Stephanie, can you tell us about how stories like Samaria's are helping in the fight against structural stigma?

STEPHANIE  50:20

Samaria, thank you for sharing that. In the literature, your experience of going into the healthcare provider about a physical health issue, and they attach it to your mental health, they call it “diagnostic overshadowing” for diagnostic and treatment overshadowing. It's quite common, we hear this time and time again. And so, think how we use lived and living experience to inform and inspire positive change or change in practice, to get around these problems, is actually by having these stories heard.

We've found that when we offer these kinds of anti-stigma interventions that feature the stories and the voices and the experiences and perspectives of people with lived experience, and that talk about their interactions with the healthcare system, both good and bad, where folks are able to say, "These were the negative experiences I had, and this is how I felt, and this is what happened.” But usually, people can also identify some positive experience to say, "This really meant a lot to me," or "This really made me feel safe," or "This actually gave me hope, when this nurse did this thing, or this doctor did that thing." When providers hear those stories, it can transform the way that they think and the way that they practice, because the way that they are learning, when they hear those stories is very, very different from the way that they are thinking and approaching and interacting with a client and a clinical encounter.

And what's ironic is that in healthcare context we often hear, "Well, we don't need anti-stigma training, we don't have stigma, we're in contact with patients all the time. We know their stories… we know their lives." But as Samaria's story highlights, they don't because they're only asking the questions that they think are important. They're not often asking the questions that are truly important from the person who is experiencing whatever troubles they're experiencing.

The more that they hear those lived experience stories in that context, where all they really need to do is sit back and listen and learn, that's where you can get those real shifts in understanding and those shifts in awareness, and that learning where they take something out of that. We've heard this feedback from people who have gone through these kinds of trainings where they say, "I didn't realize I was doing that, I will try to listen more, I will make a point to judge less, I will start to notice when I'm making judgments and making assumptions. And I will check myself." And so that's really encouraging when we start to hear that feedback.

JO  53:01

In my work with local government, we often talk about the need for behavior change, and certainly people need to be informed about their behaviors and how they could be made better. But even more important is people being emotionally connected to the topic they're focused on. So, when you talk about reaching out to hospital staff, for example, you can tell them about the statistics and about the need for change till the cows come home. But not until you engage them emotionally, will they actually make that step to change. And the best way to engage people emotionally is through storytelling. And when you have a story like Samaria's that is so rich with emotion, that is what really is going to make the difference. I love that you're embracing that.

STEPHANIE  54:03

Thank you. Yeah, it is so important. I can share with you a little bit of a story that I heard from a partner we're working with in BC. She provides training to healthcare providers... and it's stigma informed training. She went and surveyed a group of nurses and she said, "What would you like your patients to know about your work and your experiences that they don't know?” And they came up with a list: I wish they knew how hard my work was some days; I wish they knew that I was doing the best I can; I wish they knew that I do really care, but sometimes I'm constrained by the system or whatever; I wish they knew how much was going on under the surface for every actual interaction I have with a patient; I wish they knew how much other stuff was actually going on; I wish they would see me as a person, as a real person.

This partner then went and asked the same thing to a group of people with substance-use problems [who] were attached to the healthcare system in one way or another. She asked,” What do you wish your care providers knew about you that they don't?" And the list was the same. So, this was an aha moment when you realize the two lists are really the same… that what both parties really want is this recognition that everybody is doing the best they can, and that they are people, and that they are struggling in different ways. And so that's always resonated with me.

JO  55:31

Samaria, given your Indigenous heritage, you had a front row seat to the systemic racism playing out in our healthcare system. Can you talk a little bit about the links between racism, stigma, and the diagnosis and care that you received?

SAMARIA  55:49

When I was [first] diagnosed, PTSD was something that was just used for people that had experienced war. It wasn't used for the general population at that time. And that also, as I referred to earlier, I saw the video how bipolar was being diagnosed more... the pharmaceutical companies were pushing it to make more money on their medication. The racism came about because the medical teams were all Euro-centric, and they didn't realize that there's different cultural norms, there's different things that people have been exposed to. So, the system is created for one culture and one set of people. Well, Canada does not have that.

We are a part of multiple cultures all coming from different places. And so, it's really important that our healthcare system mirrors that… that the doctors and all the providers learn about cultural training and take it. The thing is, you can only do so much... like everybody has a bias towards other people. I have biases towards other people. When I see certain people that automatically flashes in my head. I have a judgment come up, according to something I've been taught along the way, or according to an experience I've had with individuals similar to that.

So, what we need to do is to start realizing that when we encounter somebody, when we have that judgment or bias pop up in our head, we need to recognize that. And we need to try and understand where that's coming from, so that it doesn't color our interaction with that person. And if that bias is too much, then you shouldn't be working in that area. Because everybody deserves to be treated with respect and to be helped in the system. We do not need people in the system that are judging and create over bias of people from other cultures and races. That can't be here anymore.

JO  58:09

Stephanie, is your research showing anything about the link between systemic racism and stigma?

STEPHANIE  58:17

It's a huge problem, and I couldn't agree with Samaria more. In the literature, we talk about this as “intersectional stigma,” the intersection of illness-related stigma or substance use-related stigma with other marginalized experiences and identities. And we've started to see more reference to it in the literature and research in recent years. But in my opinion, it's still way too under-addressed in terms of how we go about addressing it, or measuring it, or capturing it. There's more and more training now in healthcare environments, implicit bias training, which I think attempts to get at some of that stuff. But we need to do a lot more.

JO  58:54

While we're talking about stigma from a broader perspective, I'm interested to know about the impacts of mental health stigma on social and economic well-being at the national and community levels. Stephanie, any thoughts on that?

STEPHANIE  59:11

I think it has very far-reaching impacts. I don't have any stats on hand, but one figure that is quoted quite often is the cost of mental health to the [Canadian] economy... it's something in the range of $50 billion a year. Stigma will play a part in that… there's lower productivity, there's more time off work, there's family breakdown, there's people getting kicked out of their apartments, there's people losing their social networks. This is all related to stigma, whether it's self-stigma of not getting help, whether it's anticipated stigma that you're going to be treated poorly when you do seek help, whether it's actual discrimination that you encounter when you do disclose. I think with stigma, it contributes to all kinds of things... suicides, job loss, lower productivity, dropping out of school, social exclusion, homelessness, substance use. I think it affects everything.

JO  1:00:00

Samaria, from an individual's perspective, how did stigma impact your own social and economic well-being?

SAMARIA  1:00:10

Well, when I got diagnosed, I was put on AISH.

JO  1:00:14

What is that… by the way?

SAMARIA  1:00:16

[Assured Income for the Severely Handicapped in Alberta.] AISH workers don't treat you very nice. It was quite the thing for the doctor to get me on it, but it's not even a livable income. I had to live in Calgary housing… it was just a horrific place to live. There were all sorts of really negative things happening in that building all the time. I did not have people that I could connect with appropriately where I lived. [The Canadian Mental Health Association] did have a program that I would go to during the day that was a wonderful help to me. They provided me with an opportunity for outings and to talk to people, and they had support groups that were wonderful.

Many people didn't want to have anything to do with me when they found out that I was labeled that, which decreased my self-esteem immensely. I really saw the stigma in it when, at one point, I was a volunteer for a place called SupportWorks, and we ran weekly mental health groups at the Canadian Mental Health Association in Calgary. It was like an open group, anybody could come, but we did have a qualifier, and that qualifier was that you didn't have to use your real name when you came to the group. And a lot of people didn't use their real name, because of the horrific stigma that is attached with it, and that is so sad.

JO  1:01:52

This next part to me is just so fascinating. The report Rick mentioned earlier called Addressing Stigma: Toward a More Inclusive Health System, he points out that stigma can benefit those in power in several ways. For example, stigma-supporting policies and practices could keep people "in" by enforcing preferred social norms and values. They could keep people "down," which maintains one group's advantage in society, and they could keep people "away" to avoid disease or a perceived threat. Samaria, has your experience born this out?

SAMARIA  1:02:39

Yes, when you're receiving just a little bit of money to survive, I couldn't afford to go get adequate counseling that I needed. I couldn't afford to do anything that I would have had to pay for by myself. So, it's really hard, your cohort group becomes quite small. And you have to be really careful who you're around. Because when you tell somebody openly that you're labeled with a mental health issue, a lot of people run, there's just so much stigma attached to it. It's awful. The thing is, many of us in our lives are going to either have a mental health issue, or we're going to be close to somebody that does, yet our society makes it this horrific thing. And everybody runs from it, when it is part of our lives.

JO  1:03:35

Getting back to the benefits for people in power, Stephanie, what have you found in your research, if anything? I just find it hard to believe that they would make decisions based on their impacts of keeping people down.

STEPHANIE  1:03:52

I think a lot of decisions are made, maybe not with that specific intent. The intent isn't malicious, that we want to keep certain people down and away or segregated, but I think that's the consequence.

JO  1:04:04

That's what ends up happening. Is this something that you're going to be looking into in your research?

STEPHANIE  1:04:10

I think it's always there as an important context piece.

JO  1:04:14

Today, I wanted to focus primarily on structural stigma, but I do want to touch on public stigma and self-stigma. So, let's first learn more about public stigma, which is often called external stigma. Stephanie, what do we need to know about it?

STEPHANIE  1:04:34

I've maybe mentioned it before, but just to define it a little bit… when we talk about public stigma, we're referring to negative attitudes and beliefs that motivate individuals to fear, reject, avoid, or discriminate against people with a mental health or substance-use problems. It takes place kind of at that individual level in those everyday interactions and behaviors. When public stigma is enacted, it's enacted or channeled through the words that we use, the things we believe, the judgments we make, the policies we support, and the way we treat people in our everyday interactions.

JO  1:05:08

What about how stigma affects families?

STEPHANIE  1:05:12

There's a term in the literature called “courtesy stigma,” which is often applied to the fact that people who have family members with mental health problems experience stigma as well. For example, a parent who has a child with a mental health problem... that parent gets judged, as well: "What did you do wrong? You're clearly a bad parent. You clearly didn't raise your child well." They experience the judgment and the attitudes as well.

JO  1:05:36

And what about workplaces? 

STEPHANIE  1:05:38

We see stigma in the context of people not being promoted. If they need to take time off for their mental health, they're judged more severely and penalized more severely than people who are taking time off for other health reasons. It might be a preference for social distance… "I don't want the person to be on my team” or “I don't want to work next to that person”... and/or social exclusion within the context of the workplace. There's lots of examples in workplaces as well.

JO  1:06:04

So, does workplace stigma fall under structural stigma or public stigma?

STEPHANIE  1:06:10

That's a really good question, and I think it's both. Public stigma, the way that I try to think about it, is between individuals. And when I think of structural stigma, it's the rules, it's the policies, but it's also the organizational culture. So, I think that it is possible to have a psychologically safe organizational culture that, as a culture, has really tried to combat stigma... that your mental health policies are sound, that your leadership promotes mental health and mental wellness, and that there's protections for people with mental health problems.... and all of this stuff is enforced and a positive, open, supportive, non-judgmental, workplace culture is encouraged. But then you can still have individual examples of stigma... individual cases.  I think it is both, but I think it can also be separated out. I think you can also make a distinction.

JO  1:07:06

Samaria, how have you experienced public stigma?

SAMARIA  1:07:11

I look quite European in my features, but you can tell that there's something there that's not European. Just a few weeks ago I went to a store with my daughter and my grandson. And we're walking around the store and there's this clerk and there was a security guard there… and the security guard is watching us. The clerk came over to us and my grandson... it's quite apparent he's Indigenous... and the clerk came up to me and said, "Oh, is that child mixed?" And I said, "Yes, we all are. I'm the mother. This is my daughter. That's my grandson." And she goes, "Oh, that's why we have a security guard here is because there's a lot of drunk people coming in here and addicted people."

I was kind of shocked at the interaction, but at the same time, I took it as a teaching opportunity. I pulled the clerk aside and I explained to her why those people coming in had addiction issues. It was about a half-an-hour I stood there and talked to her. And she was extremely thankful after I had talked to her. But still the situation happened.

JO  1:08:29

Good for you for taking the high road there. My question, though, with regard to that is, in our incredibly sensitive times around topics of race, why do people even consider it okay to make those kinds of comments or to ask that kind of question? 

SAMARIA  1:08:50

I wish I knew. 

JO  1:08:53

Stephanie, what do you think?

STEPHANIE  1:08:55

I don't know, I find it stunning when I hear stories like that. But the good news, Samaria...  hopefully after that conversation you had with that woman, that incident maybe won't happen again.

SAMARIA  1:09:07

I'm hoping so.

JO  1:09:09

What can be done to reduce public stigma? I realize it's going to take a long time, but where do you think we can start with that, Stephanie?

STEPHANIE  1:09:18

In the small things that we do, we can call things out when we see them incorrectly. We can pay attention to our language. We can call out stigmatizing language when we see it. We can call out racial behavior attitudes when we see it. In terms of the work that the commission has done, and the work that I've been involved with at the commission, we have a lot of evaluation-based research evidence on what works to reduce levels of public stigma in the context of training interventions. The training interventions, whether they're being provided in workplaces, whether they're being provided in schools, whether they're being provided to healthcare providers… we have some evidence as to what works and why.

And again, it very much comes back to the notion of using social contact or contact-based education, which I know we've talked about already, which is having those people with lived experience share their personal stories, and also being able to share their stories of recovery. We found that that is one of the most potent and effective ingredients. And quite frankly, the more stories, the better.

And combining that with a bit of an educational piece is also important. What we've learned there is that the type of education is important. We need the kind of education that specifically aims to disconfirm stereotypes and debunk the myths. People don't have a problem of a lack of education about mental health and mental illness and substance use. It's that they have the wrong information.

We've talked about this already, and Samaria has mentioned it... people judge, they blame, they make assumptions. And so, the educational piece is about ways to debunk those assumptions and those stereotypes and those myths. Just improving literacy doesn't often do much to reduce stigma, but having the combination of those myth-busting types of education, and the personal stories to kind of make that personal connection, and the awareness raising that happens through that is a really good approach.

JO  1:11:16

As I mentioned earlier, certainly we have to move from information to inspiration for change, and that the key ingredient between those is engaging people emotionally. We're doing that in this podcast by combining science and storytelling within each issue, and I'm really excited to see how well that's working. And this discussion is so amazing, I think, in its capacity to inform and inspire people for positive change.

Samaria, Stephanie talks a lot about storytelling and how important that is. You've committed to being very vulnerable about your experiences. How are you hoping that will change public opinion and behavior around mental health issues?

SAMARIA  1:12:13

People connect more to stories. It's more real when they listen to an individual speak [about] what they have gone through. People can feel the emotion, people can understand that's a real person... that it's not a chapter in a book... they can connect with it more. Research is wonderful to support the stories, but the actual being able to listen to a human being that's gone through something, and to listen to them verbalize... it creates a connection that research can't, or that other venues can't. That's why movies, they can touch your heart, because you see in that movie, you see a story. You see the actor, his emotions, you hear what they're saying, you connect to it. And that's why doing stories of real people is a way to create change, because it's coming from the heart of that individual that is experienced.

JO  1:13:22

The last of the three main types of stigma is self-stigma or internal stigma. Samaria, what does that mean to you?

SAMARIA  1:13:33

I carried that internal stigma for years. I literally hated myself. I hated myself for being Indigenous. I hated myself for being labeled mentally ill. I thought I was the scum of the earth. And what happened was, the self talk that went on in my brain, I call it the monkey brain or the monkey chatter that went on, it just kept me down because that's all I thought: “Everything I do it's because you're an idiot. It's because you're nothing. You're never going to amount to anything. You're disgusting. Everybody else is better than you. You might as well just kill yourself because nothing is ever going to happen in your life.”

I stigmatized myself so much. I internalized everything and created this horrific talk that went on that even brought me down further. And then when I realized what was happening, that my brain is just talking, that it is just self talk.. it isn’t real… there’s nothing to validate that. Then I started realizing that my stupid brain is saying things that aren't real. And I started realizing that I can replace that with positive self talk. And when I started doing that, my whole inner dialogue started changing. And that personal stigma that I carried, it started to leave me. And it was an incredible process when it happened. And now, yes, every once in a while, those horrific thoughts still enter my mind, but I always tell myself, “You're lying to yourself. It's not true.”

JO  1:15:26

The more I interview people for the podcast, I hear about the importance of exploring personal identity before, during, and after healing. And what you've talked about is a move from hating yourself to now loving yourself, what has that process been like for you?

SAMARIA  1:15:48

it's been extremely liberating. When you're listening to demeaning self-talk all day long, it contributes to a state of anxiety and depression. And it's just this big hill that you start sliding down. And it just accumulates, and it gets worse and worse. And as it gets worse, there's more than negative self talk, it just perpetuates itself. And it accumulates like a huge snowball.

And then when you start to do the healing, and you start to work on yourself, and then you start changing that self-talk, and discounting the negative stuff that's appearing in your brain… you start making that beautiful appeal to loving yourself. And as you become stronger in that area, those horrific thoughts start diminishing. They still happen, but you don't pay attention to them as much because you realize that's really not part of you. That's the leftovers of what was from a long time ago. And you start focusing on the beautiful thoughts you have yourself, and about how you're going to make it about how wonderful you are, and what you're doing, and the positivity in life.

JO  1:17:15

It's such an amazing story. Stephanie, what does your research show about self-stigma?

STEPHANIE  1:17:21

It reflects a lot of what Samaria talked about. We know that self-stigma is a huge barrier to help-seeking. And we know that it really interferes with recovery. And I think Samaria illustrated it beautifully in what she was talking about. We see a lot of shame, hiding, self-blame, self-hate, that comes out a lot in the literature. And it keeps people down. It really interferes with recovery in a big way.

JO  1:17:47

We're heading to the homestretch here. So, what I'm hearing from the two of you is that as a society, we need to move from stigma to compassion, from stereotyping, and discrimination to equity, and dignity. And that's a really tall order that starts with each of us as individuals, exploring and addressing our personal biases about mental illness, and the people who experience them.

And what I am learning is that, although we grew up in a country that is seemingly civilized, we grew up in a culture that had these biases. So, we've learned how to think about people, how to talk to people, how to treat people, based on that culture of judgment. And as I say, prejudice is understandable given that we've grown up in this culture, where stigma is common and discrimination is often easily justified. So, Samaria, you talked a little bit beforehand about what we can do as individuals, maybe you can give us a few action items.

SAMARIA  1:19:06

You know, when you're walking down the street, and say you see a homeless person, or somebody that's addicted on the street walking towards you. Right away, you have these thoughts in your head that come up... say that person is asking for money from you. You don't have to give them any money, but you don't have to treat them like a non-person either. As you walk by them, smile at them and say, "Hello, I'm sorry, I can't give you any money, but I hope you're having a good day." That in itself is a huge thing. That is a human being standing in front of you. Give them the empathy and compassion of being a human being. That's all we have to do.

Start looking at other people as fellow human beings. In Indigenous culture, we say we are all related. And we are, we are all related human beings. We would not have survived as a species if we were individuals... we came together. And we looked at the good parts that everybody had. And we combined and we all worked together to survive. And we need to do that now.

Yes, we have our differences, but that's what makes us all beautiful. Let's take those differences and learn what every culture has.  Every culture has something beautiful to contribute. Let's take it and put it all in a pot and celebrate every single one and every human being, instead of judging and thinking, "Oh, well, mine is better than theirs is." No one is better than the other, we are all equal. And when we strive for that, oh my God, things are going to change. Just see the beauty in every human being that you come across.

JO  1:21:08

Stephanie, can you give us any pointers about finding the biases that each of us holds, and changing those? And what kind of impact that's going to have on cultural change?

STEPHANIE  1:21:22

Think about your own sphere of influence, or sphere of control, and how you can influence change within that. So, within the context of your own family, can you change your language and check in with your kids and other people in your family to make sure that stigmatizing language isn't being used in the household? In the workplace? Can you do the same depending on what your role is in your organization? If you're in a leadership role, you've probably got a lot more power uncloaked to maybe instigate changes, to be a champion, because it does start by leading by example.

In terms of tips to kind of reflect personally on where we might have biases that we don't realize, or where we might be carrying stereotypes or negative attitudes, or behaving in ways that aren't as supportive as we would like... it's just a matter of looking inward and committing to that self-reflection and committing to that willingness to be open, that willingness to just listen with your heart, and not judge and get the full story.

One thing that I find helpful for me is I compare mental illness and substance-use problems to other health conditions. If we were talking about heart disease, would this be how we were treating this person? Or would this be the language that we're using? Or would we even think that this was remotely acceptable as a standard of care? I found that that's helpful.

And interestingly enough, in some of our qualitative research, particularly on the research we did in relation to the opioid crisis, and we were talking to direct service providers and frontline provider, and people with lived experience, they raised examples like that a lot. And they were talking about lack of response, or the way that people talked, or the way that people acted, or whatever it was, and they themselves would compare it to some other public health crisis, for example, or some other health condition and say, "If it was this condition, there's absolutely no way that this would be considered acceptable." So that's been a helpful approach for me.

JO  1:23:22

Okay, so let's bring this all to a finer point. Samaria, as a person with lived experience who's now helping other people address their stigma-related challenges, what would you like to say to Stephanie that will inform and inspire her research? 

SAMARIA  1:23:41

Stephanie, you have an opportunity to create change. Research, powerful research, can direct policies, and those policies and the policy makers are the ones that change... and then it's a trickle-down effect, to the individuals that receive the care. You have the opportunity with research done in a way to help others. That is an extremely powerful seat to be in. And I would love to be sitting back when you're done with your research that you're currently now doing now, and to hear what you have coming up. I think it's going to be extremely exciting. And it's a wonderful opportunity. And you talk like an individual that's going to be doing research that's going to be used appropriately in our medical fields and in medical care. So, thank you so much.

JO  1:24:49

Stephanie, as a stigma researcher, what would you like Samaria and our listeners to know about your vision for a stigma-free future?

STEPHANIE  1:25:00

First of all, I'd like Samaria to know just how inspired and incredibly humbled I am by her bravery and courage, which I spoke to at the beginning as well. But I just want to say it again, everyone who is out there sharing these deeply personal and often very difficult stories are the true champions of stigma reduction. And as we know, research alone isn't going to do anything. I appreciate the value of what research can do, but at the end of the day, it's about people like Samaria who are willing to expose themselves and their vulnerability to make this world a better place.

And it is through that courage, and that bravery, and that willingness to share what is so deeply personal, and what is, in many cases, extremely painful... that is the real triumph of combating stigma. And the more that we are all willing to share our stories, whatever those stories may be... that is my vision, ultimately, for a stigma-free future, when everybody can tell their story and it's like telling a story of the common cold, that there is no judgment, there is no blame, that it is just support and shared humanity that envelops those stories.

JO  1:26:23

So, in summary, I have five rapid-fire questions for you both in one word or sentence, what do you think about the following?

The greatest challenge associated with stigma, Samaria… 

SAMARIA  1:26:36

Closed minds.

STEPHANIE  1:26:37

I would say it's pervasiveness. I feel like stigma is one of those Whac-A-Mole problems. You knock it down somewhere, and it pops its head up somewhere else.

JO  1:26:46

The greatest structural or bureaucratic barrier to reducing stigma…

STEPHANIE  1:26:52

I would say that willingness to make the commitment... that willingness to make it a priority.

SAMARIA  1:26:58

I would say that those in power feel losing control. 

JO 1:27:01

The biggest community benefit of reducing stigma…

SAMARIA  1:27:05

Empowerment.

STEPHANIE  1:27:07

Yeah, that's a good one, I'd say more supportive communities.

JO  1:27:10

The one thing we can do right now to decrease stigma…

SAMARIA  1:27:15

To model wellness.

STEPHANIE  1:27:16

I would agree with that fully… and make a commitment to listen more and judge less.

JO  1:27:22

And finally, your personal commitment to being the change we want to see…

SAMARIA  1:27:27

Be a warrior in every moment of your life.

JO  1:27:31

It sounds like you're well on that path.

STEPHANIE  1:27:38

I commit to staying vulnerable and staying open, and to keep researching, as it is what I do in this space. And to really try to keep that research relevant and applicable.

JO  1:27:49

And I promise to continue the conversation about stigma in future podcasts. Thank you so much, again, Samaria Nancy Cardinal and Dr. Stephanie Knaak from the Mental Health Commission of Canada for joining us. It's been a privilege and a pleasure to explore this vital issue with both of you.

SAMARIA  1:28:13

Thank you so much, Joanne, and Stephanie, for creating this safe space, and this podcast to address this issue. It touches my heart that you guys are doing this type of work to create change. For no one can do this alone. We need to walk together on this to create a world that our children and grandchildren are going to be smiling as they walk through their lives.

STEPHANIE  1:28:46

And thank you, Jo, and thank you Samaria. I feel deeply grateful and privileged to be a part of this conversation today. It was inspiring for me on many levels, and deeply meaningful, and hopefully productive for the audience and the listeners. I will definitely share the podcast link through my networks. And I look forward to working with you both in some other context in the future.

JO  1:29:10

Well, thank you both. My goodness, this has been a wonderful conversation. I find the balance between the science and the storytelling [so productive]. First of all, Samaria, your story is so powerful. But from this perspective, it's only as good as how we can take it and use it. So, I just think it was a wonderful talk. Thank you so much.

SAMARIA  1:29:40

I think stories are wonderful, yes, but to be backed by research... so many people, they just consider statistics and scientific method and things. So, to be able to tell a story and have it backed by the statistics and the research makes it even 1,000 times more powerful.

JO  1:30:01

To connect with Samaria, send an email to samaria@mysticalmetis.ca. And for Stephanie, her email is sknaak@ mentalhealthcommission.ca. For more contact details and a list of stigma- related resources, check out this episode’s show notes at freshoutlookfoundation.org.

Kudos again to this episode's major sponsors, the Social Planning and Research Council of BC and the Central Okanagan Foundation. You are very much appreciated!

And thank you all for listening. If you enjoyed the podcast and would like to support the Fresh Outlook Foundation's valuable work, please visit freshoutlookfoundation.org/ donation.

In closing, as Winnie the Pooh says, I'm so lucky to have something that makes saying goodbye so hard. So instead, I'll say be healthy... and let's connect again soon.

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