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Al Wiebe on the Winnipeg Foundation’s BeCause & Effect Podcast in May 2024.
Meet Al Wiebe: Born and raised in Winnipeg, Wiebe lost his job in advertising sales in 2009 and spent two and a half years without a home. He’s living in an apartment now and for more than a dozen years has been a tireless advocate for the importance of housing coupled with support. This is his story.
My dad was a hellfire-and-brimstone preacher. Very strict. My mom suffered from mental illness. My life as a child was not pleasant at all. I was a black sheep – I never felt like I belonged. I had to do a lot of things for myself. Maybe that independence helped me later.
My dad had a housing exterior company, doing siding and eavestroughs. I took it over when he went full-time into the ministry. I was 18. I went to the bank, bought a house and a truck, the whole works. Then I had my first kid a month later, then another one 11 months later. Talk about pressure.
King’s Coronation Medal
I wasn’t a good father or husband. I was focused on the business, and I was never there, so I didn’t have a great relationship with my kids.
I also struggled with depression for years. I was on and off anti-depressants. But I wasn’t on any medication for the five years before I lost my advertising job. I was too busy making lots of money. But when the company’s owner replaced me with his friend, I couldn’t handle the trauma. And I didn’t ask for help. I was a single guy, in my mid-50s, living a block away from work. My job was my life. I had no balance, no friends, and wasn’t really in contact with my family. I kind of lived in my own head.
Living in the car
I left the city for a while but ended up back in Winnipeg. I wanted to wallow in my misery. I had sold my Mercedes but still had a nice apartment. I just kind of ruminated and started thinking about suicide. I’m diabetic and stopped taking my drugs for that, which wasn’t good either.
Al Wiebe, at right, with Point Douglas Ward, Winnipeg, city councillor Vivian Santos in March 2025. Wiebe – a peer and community engagement trainer and housing director – was presented with the King’s Coronation Medal for his advocacy on ending homelessness and advancing lived experience leadership.
One day, I just walked away from the apartment with my bag. I’d eaten at a Vietnamese restaurant a few times and behind it there was an auto dealership that also had a scrapyard with cars they used for parts. I plunked myself down in the backseat of a ’64 Mercedes — I used to drive one so figured why not live in one for as long as I’m here. I thought I’d last for a night or two. But I spent 14 and a half months living in that car.
I’d be gone by seven in the morning and stay away until seven at night, because that’s when they closed. I didn’t use food banks or shelters or soup kitchens, none of that. I collected empty beer cans and change from people at drive-throughs. That’s how I existed. But I lost 32 pounds and became very ill. I developed pneumonia and neuropathy from my diabetes. I could hardly walk some days. I began to lose hope. I didn’t think I’d get out of there.
I went to the hospital three times and three times they turned me away because I was homeless. I was looking for psychiatric care and they treated me with disdain. They told me I had to “work on things.” Work on things? The only thing you can work on when you’re homeless is survival.
Signs of hope
A few days later, I went to another hospital, to the crisis stabilization unit, and then spent 24 hours laying low in my car. A couple days after that I went to St. Boniface Hospital. I was a real mess. When I finally saw a doctor, she changed the course of my life.
She said, “You’ve been everywhere and people either could not help you or would not help you, but today I’m going to help you. It’s like you’ve fallen off the edge of the world and don’t know where you are or who you are, and you don’t know how to help yourself. Starting today, you’re going to get better and get stronger. You’re going to start becoming the person you want to be.”
She gave me hope. She told me that I was carrying a lot of trauma and I had to start believing in myself. That someday, I would be able to help other people who were in this position.
After a month in the hospital, I spent 14 months in a shelter. I hated it. There were two killings while I was there. I got attacked and my ribs were broken. At times, I wanted to go back to the streets.
I finally found a home when I got an apartment across the street from the Ma Mawi Wi Chi Itata Centre after I got out from the shelter. It’s an Indigenous organization that does amazing service-provision work. It was a big green house, and I saw people milling around. So, I went in and asked if they needed any volunteers, because I needed purpose. I needed help myself, but I also needed something to do. They must have seen something in me. They allowed me to volunteer and, over a couple years, to take courses: suicide prevention, food handling, First Aid and CPR, non-violent crisis intervention. Class after class, workshop after workshop.
The things that make you a complete person
The greatest casualty of homelessness is a loss of self-respect and self-worth, dignity, and confidence. Everything that makes you a complete person and allows you to move forward. I lost all that in a big hurry, but every time I took another course, it was like I was opening a cupboard and putting in a jar of confidence, then another one, then another one. I become a more confident person slowly, not that swaggering, SOB advertising executive who could do anything. I was so arrogant in those days. But I began to feel better about things. I knew I was going somewhere. I started to feel that I could do more.
After two and a half years, I started working as a cook at a drop-in centre once a week. I was cooking lunch for 70 people. Then one of their case managers, whose job was to keep people in housing, quit. And they offered me a job. I hadn’t worked in five years. Two and half years of homelessness, two and a half years of recovery. I said, “Sure.”
Countering judgment and stigma
These days, I live in a one-bedroom apartment with a friend who I’m a caregiver for. I help run a housing first program and organize an annual human rights symposium. I do talks about homelessness and training sessions with people from all three levels of government, including local city councillors as well as police officers, firefighters, and paramedics. I talk to nursing students and hospital staff about poverty, stigma, and unconscious bias. “Are your judgements impeding your ability to give your best to the vulnerable?” Homeless people fill up emergency rooms, and they often treat people who are homeless in an inhumane way. Our health-care system doesn’t really understand the connections between homelessness and mental health. Our governments don’t, either.
Having an apartment is great, but the work gives me purpose, and I couldn’t have got here by myself. You can’t do anything without a home, that’s for sure. That’s why I’m big on housing first. You put somebody into housing, then you look after their needs. You can’t look after anybody’s needs on the street. And you can’t get by when 80 per cent of your income goes to housing.
People think that because you’ve spent time on the streets, you’ve lost something. In my case, I’ve gained so much wisdom. I’ve had a lot of success because I have lived experience. It helps you build trust. My experience gave me deep, deep empathy.
When you’re homeless, it exacerbates your mental illnesses. It compounds them by 10 times. Because there’s trauma just about every minute of every day. Because you don’t feel secure. But it’s not just housing. Having a place to sleep won’t make you healthy. You need a case manager. You need a counsellor. You need trauma-informed medical care. You might need to work on addictions. You need wraparound support. Otherwise, life could come crashing down on you again. Housing alone is not the answer. But it’s a big part of the answer.
Poverty can be just as traumatic as homelessness. People use so much energy every day and struggle so much, especially these days because of economic conditions. People are dropping from middle class into poverty — people who’ve never experienced poverty before — and people are dropping from poverty into homelessness. People really need access to the right services, because things are really difficult right now.
It’s rewarding to be helping keep people off the streets. Two years after I escaped homelessness, I came off my anti-depressants because I had a focus. That focus was other people. But for me, bridging the gap with my family is best thing about getting my life back together. Two of my children are in their 40s and one is 50 and we get along better than ever. They’ve all done really well for themselves. My daughter and I speak on a very cerebral level. My boys and I talk sports. One of my sons is in Winnipeg today for work and I’m going to see him for dinner tonight.
Did You Know?
- Roughly 60 percent of people who are homeless in Canada face mental health issues, according to a federal report that looked at 2020-2022 nationally coordinated point-in-time counts.
- According to the Homeless Hub online resource, mental illness can make you more susceptible to unemployment, poverty, social isolation and other challenges, all of which increase the risk of homelessness.
- Whether you are on the streets, in a shelter or some other liminal situation, the lack of stability and security can amplify psychological conditions.
- Access to safe and affordable housing, accompanied by a range of supports, is one of the most effective ways to end this cycle.
- A housing first approach is less expensive than public expenditures on health care, policing and other costs associated with homelessness, according to a CMAJ study.
Resource: Housing First in Canada
Author: As told to Dan Rubinstein, an Ottawa-based writer and editor who frequently writes about health issues.
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When I scroll through social media in the morning, groggily reaching for my phone an hour before my attendant care worker is scheduled to come and wake me up, I am almost always hit with some type of disability meme or post. They usually come in two flavours: one about how disabled people can do anything they put their minds to, or how the only disability that we have in life is a bad attitude, next to a picture of a disabled person defying the odds by scaling a mountain, skydiving, or something like that.
The second type of meme or post that I usually encounter is a magazine article detailing a beautiful person’s tragic accident that left them “wheelchair bound,” but “that doesn’t stop them from living their best life,” or something like that. These all-too-common representations in disability media leave us with very narrow views of disability. You either overcome disability and morph into a heroic figure, or you turn a tragic story into an uplifting one for others to draw out inspiration.
Not your tragic hero
We don’t only see these depictions in the media, they happen in real life as well. I can’t count on one hand the number of times that I have been approached by someone and told with their furrowed concerned brow, ‘I don’t know, if I were you, I think I might just kill myself,’ or the patronizing, ‘You don’t let your disability stop you, Andrew.’ There is rarely any space for a nuanced conversation about what it actually feels like to live in a disabled body, and let me tell you, it is so much more than those stereotypes.
One of the parts of living in a disabled body that is often discounted and entirely underrepresented is disability grief. My definition of disability grief is this: It is the grieving that comes as the result of living in a disabled body that copes with more loss and abrupt changes than most.
As a severely disabled person, I experience disability grief often – sometimes it comes up as a longing for something that I will never be able to do like running, jumping in the air and somersaulting, or even something as seemingly mundane as giving myself a shower. Other times, disability grief will come from some function that I lost the ability to do. I grieve that I can no longer use the toilet to go pee on my own and that I have to be catheterized everyday instead.
If I’m truly honest, the grief of losing that simple pleasure can’t be translated into words. I grieve that as I age in my disabled body, the pain is becoming more apparent, and it is becoming harder and harder to do many things that my disabled body used to do. All of this has had a major effect on my mental health; I find myself becoming more irritable, quicker to upset, and quicker to fall into depression.
Mental health professionals need to catch up
Kristen Williams
To understand disability grief and its effect on disabled people’s mental health better, I spoke to disabled psychotherapist (qualifying) Kristen Williams. She lives with cerebral palsy, anxiety, and major depressive disorder. She says that in her experience, disability grief is compounded.
“Disabled people are grieving the reality of our lives, and the things we cannot do, alongside our lost potential – the things we want but most probably will never have,” she says. I also asked her how mental health practitioners can help manage disability grief.
“The key is not to shy away from disability grief. Many people in the helping professions feel motivated to ‘fix’ or ‘help’ people, and sometimes this can look like offering solutions and encouragement, when we should be offering space and validation,” she says.
One of Williams’ takeaways is that therapists are not shielded from ableism – “a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other,” as defined by the Center for Disability Rights, a not-for-profit, community-based advocacy and service organization in the U.S.
Williams says that “clinicians experience it as much as they next person, so we have to examine it thoroughly, and strive to be anti-ableist in our practice.” I wanted to understand if Williams has seen a shift from disability grief to disability joy in her practice, and so I asked her.
“Part of moving towards disabled joy involves processing the sad, frustrating, and difficult moments that make up disability grief. Creating disabled joy looks like first understanding disabled grief.”
Getting to joy
I also spoke with my close friend Lorna Craig, who lives with multiple chronic illnesses including Lyme disease, endometriosis, and bipolar I. I asked her what disability grief looks like for her.
“For me, the way I usually experience it, because I have an acquired disability, it’s always comparing myself now to what my non-disabled self would be doing,” she says. “I think I spent many years grieving that person, and who she was, and what she might have been able to do.”
She continues, “These days I don’t know her. How do I know that she would have been a better version of myself?”
One of the key things that I gleaned from my conversation with Lorna was that disability grief is so much bigger than I think we understand it to be, and it is way deeper than just a buzz word. One of the things she said that I connect with so much is this: “Some days I wish my problems were more conventional instead of having a body that doesn’t cooperate and do what I want.” As someone living with invisible disabilities, Lorna highlighted that one of the things that brings her the most disability grief is not being believed by others.
I asked Lorna how all of this impacted her mental health and what she told me underscored just how important it is that we talk about disability grief and mental health.
“It ranges. Sometimes it can be a little irritating thought that stays with me throughout the day, and sometimes I can be curled up in a ball crying for days.”
I also asked her if she is seeing a shift from disability grief to disability joy.
“When it comes to my experience of chronic illness, I agree that you have to go through disability grief to find the joy. With my experience of mental illness, we haven’t really been given the chance to grieve and get to the joy. Sometimes, I think that mentally ill people don’t understand that they have a disability, and that they can claim that.”
Lorna and I talked for almost an hour about all of this, and she renewed in me just how important and ultimately complicated understanding disability grief and its effects on our mental health can be. Talking to both Lorna and Kristen, I learned that disability grief is different for each and every one of us living in disabled bodies and it is time that mental health professionals addressed their ableism so that they can understand disability grief.
I can’t wait to open my Instagram feed in the morning and see a disabled person with a caption that says, “I went to my therapist, and they helped me understand my relationship to disability grief.”
We’re not there just yet – but we could be.
Author: Andrew Gurza (they/he) is the author of the book, Notes From a Queer Cripple: How to Cultivate Queer Disabled Joy (and Be Hot While Doing It!), dozens of articles, and the viral hashtag #DisabledPeopleAreHot. He is a disability awareness consultant and podcast host.
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It’s more than just another self-help book. The Mental Health Guide for Cis and Trans Queer Guys (New Harbinger Publications, June 2025) blends personal reflection, clinical insight, and a heartfelt tribute to queer men navigating their mental health in a complex – and often contradictory – world.
Rahim Thawer, a queer Muslim social worker and doctoral candidate at the University of Alabama, draws deeply from his lived experiences, his professional work as a psychotherapist, and numerous conversations with queer and trans men.
They face myriad challenges throughout their lives, from the processes of coming out, to the nuances of growing older, and everything in between.
Topics including internalized shame, heteronormative culture, managing rejection, and substance use are explored in depth. For each subject, Thawer skillfully combines academic knowledge with real-life case studies, providing readers with practical tools and guidance to reflect on their own experiences.
Solid resource
The book is an excellent teaching resource for clinicians who may not fully grasp the historical and ongoing impact of gay, bisexual, trans, queer/questioning (GBTQ) men and their experiences. Although Thawer’s guide is primarily written with queer men in mind, it has already garnered attention from therapists and educators eager to better support queer communities, something Thawer is familiar with. In his private practice, he frequently supervises clinicians seeking cultural guidance for their cases.
For example, clinicians have approached him to say, “I’m working with a gay man struggling with shame,” or “I’m supporting a queer Muslim client who hasn’t come out yet.” These professionals are seeking a framework to understand underlying issues – and Thawer’s book provides just that. It breaks down complex issues such as internalized stigma, anticipatory rejection, and challenging family relationships – and turns it into actionable insights and interventions.
Thawer’s contributions to the field have not gone unnoticed. He is the recipient of the 2025 Mary Smith Arnold Anti-Oppression Award from Counselors for Social Justice in the U.S. and also received the 2025 Honorary Award in Education from the nonprofit South Asian Americans for Change. These accolades affirm his significant role in advancing culturally attuned practices across diverse communities.
I had the opportunity to chat with Rahim recently, and the following are some excerpts from our conversation.
Psychotherapist and doctoral candidate Rahim Thawer works in the U.S. and studied in Toronto. His new book speaks to complex issues in practical ways.
Q: What inspired you to do this? It’s a big subject and a challenging one. So, what was your motivation?
A: I started my professional work and career in the HIV sector and so many of the workshops we did that were geared to reduce risk of HIV transmission, and at other times, geared toward helping people live well with HIV, they were quite limited. They were all surrounding HIV and many communities that we met didn’t need that specifically. They needed something adjacent to that, like anti-homophobia, talking about sexuality more broadly, talking about the landscape of relationships. Now, arguably, all of that is related to HIV, but I wanted to decenter the epidemic and think about what are all the things in our subculture that contribute to our mental health outcomes? Because I think queer and trans guys live in a different world. We’ve got different norms, different expectations, our own culture, our own history. We live in multiple worlds, and I think that’s what determines our mental health outcomes. So, for me, I wanted to take both my lived experience as a queer guy and my work as a therapist to really think about what are all the things that affect our mental health.
The book that I wrote, it’s not a research book. I didn’t do a study to say what are the things that affect us. I thought, here are the things I’m seeing, and feeling, and living. What if we itemize those and talked about them? That’s where the idea came from.
Q: In the world around us, we’re hearing more and more of an upsurge in anti-gay, anti-queer, and especially anti-trans, rhetoric, both culturally and politically. How do you think that’s impacting or going to impact our community?
A: Well, I think the impact will be seen long term, because right now people have anxiety about their current rights or protections becoming limited, and that anxiety is legitimate. However, for people who are well-to-do, have been out for a long time, have access to lots of resources, they were able to do that because of rights, legalization of gay marriage, decriminalization of homosexuality, because of opportunities to afford mobility. In some cases, when you combine those things with male privilege, it paved a way for them, but those very successful people, still, I would see in my therapy practice struggling with shame, relationships, internalized stigma, and fraught relationships with their families of origin. So, my point is that even when people seem to be fine in the political sphere, the messages they’ve internalized at a young age stay with them for a long time. And that is to say that before this wave of anti-trans rhetoric showed up, we were struggling in many ways with our past. And I think the anxiety around the political condition is very valid, but I think the repercussions will be felt long term. And that part is very unfortunate because lots of people will say, ‘oh, we’ll just wait four years and then we’ll get somebody new.’ And I’m thinking, no, it doesn’t quite work like that. The message is the fear; you absorb it. It stays in your body. And it’s detrimental.
The Mental Health Guide for Cis and Trans Queer Guys
Q: Do you see any opportunities from a prevention perspective in the upcoming years?
A: Potentially. I think within the broader LGBTQ community, a lot of cisgender gay men, cisgender lesbians who are in their 40s, 50s, 60s, if they’ve been able to access some comfort in their world, in their life, in their time, this might be a time where they look inward into the community and support people who are still struggling. We’re going to need some serious solidarity with trans communities, and we have for a long time needed more internal solidarity with underhoused and homeless LGBTQ youth. That is a big problem in Toronto and other metropolitan cities.
I think what we’re seeing politically is defunding of all things DEI (diversity, equity, and inclusion). And if that means cuts to LGBTQ care, then we’re going to have to rely on a different economy, which has to be more communal and collective.
Author: Ed Mantler has led innovation and improvement in healthcare for more than three decades. He trained as a Registered Psychiatric Nurse, holds a Master of Science Administration, and is a Fellow of the Canadian College of Health Leaders.
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Amanda Friesen, a professor of political science and Canada Research Chair of political psychology at the University of Western Ontario, recalls talking to a colleague recently who said he had been feeling a lot of stress with “everything that’s happening” in politics. “It occurred to me, ‘you’re a political psychologist. Is political anxiety a thing?’ And I thought, ‘yes, it is.’ And so, he and I had this conversation.” Since then, Friesen has been called upon as a national commentator on the subject, offering advice on how to cope with “political stress” and avoid “political information overload.”
In the wake of rapid, even shocking, political, and economic changes in the past several months, many psychology experts and mental health counsellors across Canada have reported an increase in the number of clients confiding anxieties brought on by contemplating how political and societal changes will affect them.
Political psychologist Amanda Friesen shown here in Copenhagen during a research project: It’s about a balance between staying informed without the adverse effects.
The CBC recently reported a surge in “nervous googling” of terms such as “tariff” and “recession.” Many people say they are losing sleep worrying about what may come next – and feeling helpless in the face of all the turmoil. Some are turning off the news entirely to protect themselves from those difficult feelings. Others are addicted to “doom scrolling” and exposing themselves to hateful rhetoric on social media. Some are dealing with the emotional consequences of cutting off family members and friends over profoundly divergent opinions and beliefs. Depressive symptoms can be the fallout.
New world disorder
The trend is so pronounced, some mental health experts are wondering if “political anxiety disorder” should be made its own diagnosis, distinct from other forms of anxiety.
“There’s a lot of general anger and disbelief, I think,” says Stefanie Peachey, a registered social worker, accredited family mediator, and founder of Peachey Counselling and Family Support in Burlington and Oakville, Ontario. “[Clients are] saying to themselves, ‘What does this mean for me? I’m already so scared and anxious about finances, being able to afford my grocery bill or my rent. I don’t really understand tariffs, but I know that things might get more expensive for me. And how do I afford that?’”
Job loss, escalating prices on everything from groceries to building materials, and the lack of affordable housing – these issues are real and society-wide in their impact. Worrying is understandable, but if it leads to feelings of anger and helplessness that interfere with your life, finding ways to cope without shutting out reality is essential.
Social worker Stefanie Peachey: Worrying is understandable with all that’s going on. Therapists can help sort through complex issues and feelings.
“We need tools available for people because we don’t want them to disengage from democracy,” says Friesen. “I think it’s on journalists, social scientists, and political scientists to find ways to help people stay engaged and informed without adverse effects.”
Friesen suggests “setting up an intentional, formalized strategy” for consuming news. She employs one herself. “I do compartmentalize my news consumption. I never read the news before I go to sleep. I have a few subscriptions to news outlets where headlines of major and minor news stories get delivered daily or weekly. I read these stories and avoid jumping from link to link to link. I read and then stop and set it aside.”
Another way to deal with the uncertainties facing all of us is to be proactive in preparing for possible scenarios. “Let’s say that you work in an industry that one of the tariffs is going to impact. Reach out to your professional organization or your company and ask, ‘What’s going to be our response to this? Is there a way to prepare for it, remove some of that uncertainty?’” says Friesen. “We could imagine all sorts of scenarios that may or may not come to pass. Just get some concrete responses. Okay, this might happen or this or this, and here are some possible responses or plans we could make in response. It should make you feel better to know.”
Why tuning out completely isn’t the answer
Getting involved in your own community, or advocating for an issue you care deeply about, can go a long way to allaying feelings of helplessness. Focusing your time and energy on helping to further one cause is better than becoming paralyzed by feelings of emotional overload about every issue you read about, says Friesen. “Maybe there are some new environmental efforts in your community, or you have a friend who keeps bugging you to talk to the city about improving bike lanes. Do it. Find the things that you do have power over and focus on those,” Friesen advises.
Peachey echoes these suggestions. “As therapists, we’re often working with clients around uncomfortable thoughts and worries; all the ‘What ifs.’ For instance, for a client who is questioning their sexuality, and you worry, ‘What if I’m not accepted for this?’ We work around that fear and talk about all the supports that you may have in their life, and all the ways you can minimize some of the stress. It doesn’t mean that it’s not stressful or that the worry is wrong, but that the client’s thinking can be reframed. The same could be applied in this situation. How can we minimize the stress and focus on factors that may put us more at ease?”
In an article entitled, “How to cope with political and social uncertainty as a Canadian,” Peachey writes, “When we consciously shift our focus away from elements beyond our control and onto matters where our influence is meaningful, we not only conserve valuable mental energy but also gain a sense of empowerment.”
Peachey and Friesen agree that basic self-care – continuing to get enough sleep and exercise, eat well, moderate your news consumption, and practise mindfulness – just doing the things that bring you pleasure, connecting with friends and family who nurture and support you, are important now more than ever.
“It just doesn’t do any good to worry about politics every moment of the day. Live your life. Spend time with your people, enjoy the outdoors, immerse yourself in projects or activities that bring you joy. Burning out won’t help you be ready for future advocacy. This might be a marathon!” says Friesen.
Above all, says Peachey, remember that you are not alone. Many Canadians are feeling the same way and expressing their frustrations through concrete actions such as buying Canadian, or changing travel plans, for example.
If you need help, contact a therapist who can help you reframe your fears and anxieties and find positive ways to cope. As Peachey puts it, “Rather than dwelling on circumstances and behaviours that drain your emotional reserves, redirect your energy towards actions and initiatives that align with your cherished values. By doing so, you not only regain a sense of purpose and fulfillment but also nurture your mental well-being.”
Further reading: The Therapeutic Power of Blue Space.
Resource: Strategies to stay informed without feeling overwhelmed.
Author: Moira Farr is a national magazine journalist and instructor in Ottawa. She has been moderating her news consumption, altering her social media habits, and using the added time to volunteer more.
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The Canadian Mental Health Association’s Mental Health Week runs from May 5-11. This year’s theme is #UnmaskingMentalHealth and encourages people across Canada to look beyond the surface to see the whole person.
Perhaps you know the tune – about Eleanor Rigby.
“Wearing the face that she keeps in a jar by the door. Who is it for?”
In their classic song about loneliness, The Beatles sum up beautifully what it is like to live with a “high-functioning” mental illness. The song comes to mind, at times, like when I am in a bipolar mood episode, I always leave the house with my mask on. Often, this is literal. I painstakingly put on make-up, painting a face that denotes coping and professionalism (wing tips for bright eyes! Blush for pink cheeks to denote good health!). When I leave the house, I match the attitude and tone of the people I interact with, putting in enormous mental effort to calculate the actions that will make me appear “normal.”
This mask broadcasts a message of “I’m fine,” when inside, I am often anything but. When I arrive home in the evening, I wash off the painted face and watch it circle the drain, as a kind of illustration of how depleted I feel, before I fall into bed exhausted from the effort.
For me, this year’s Mental Health Week theme is a call to action. When we unmask mental health, we create the conditions for reducing stigma by promoting understanding and eliminating discrimination against people with mental illness.
Masking – what is it, who does it, and why?
Masking, also known as “camouflaging,” is precisely that – trying to blend in with societal expectations by suppressing symptoms or traits, according to Autism Canada. It is a concept that has been most studied in the context autism and attention-deficit/hyperactivity disorder and is linked to the concept of “smiling depression,” a colloquial term for those who may slap on a smile to disguise their inner feelings.
Zachary Houle lives with autism and schizophrenia. He notes that autism has become more celebrated in the media (“autism chic” is even a thing), but he notes that the media portrayals can remove the reality and complexity of illnesses.
“I find with schizophrenia, people immediately think I’m an axe murderer or I’m dangerous and violent,” he says. “It takes less energy to pretend to be normal than going into an office knowing that I’m going to get hazed, which has happened in the past.”
Houle notes that a lot has changed in the 20 years since his diagnosis and that he is in a very progressive and understanding workplace now, but he still masks daily as it has become his second nature.
He is not alone. According to a 2023 poll from Benefits Canada, 45 percent of Canadian employees with autism feel that they have to mask their autistic traits at work.
Tanya Lepine-Darwiche, a woman who identifies as being on the autism spectrum and who lives with anxiety, agrees. “Masking is about the world accepting me being able to walk into a room and have my opinion heard without them placing judgments on me because I’m neurodivergent,” she says. “It’s putting on a performance.” She notes that it is harder to maintain social relationships when she doesn’t mask. “It’s what I need to do to be socially acceptable.”
As Houle and Lepine-Darwiche both note, masking is very useful in promoting social interaction and protecting oneself, but it also comes with costs, primarily burnout and isolation.
“I’d like to be vulnerable with people, to show them how much I trust them, but at least in the workplace I feel like I can’t do that,” Houle says. Lepine-Darwiche shared about the effects of a day of masking on her personal life, when she would come home and need a three- or four-hour nap just to recoup her energy. “It was really difficult on me and my relationship with my wife and family before I understood that all of my energy was going to masking,” she confided.
How masking affects treatment
If you are “good” at masking and continue to function, this can lead to downplaying how much you are affected by your symptoms. You, essentially, mask to yourself, and your healthcare practitioner, thus contributing to underdiagnosis and a lack of mental health supports, something both Houle and Lepine-Darwiche have experienced.
Masking also affects the level of social support that one receives. For example, when your reply is, “I’m fine,” those in your social circle cannot know that you might need extra support.
In a 2019 Ipsos study of working Canadians, 76 percent of respondents stated that they would be completely comfortable with and supportive of a colleague with a mental illness, but first they would need to know that support was needed.
The descriptor “high functioning” is not part of any diagnosis, but it is a term that captures of the reality of many. If someone imagines those with serious mental illnesses as not being able to get out of bed or go to work, that might be the case. However, for others, such as Houle, Lepine-Darwiche, and myself, we can attest to functioning adequately even when our symptoms are quite severe. Even my psychiatrist has had to learn that seeing me with my makeup done and my work clothes on, doesn’t mean that I am doing well.
Jessica Ward-King publishes under the name The Stigma Crusher to educate others about mental health. For her, this year’s Mental Health Theme is a chance to share more about what it means to mask – and to unmask – in different social situations. Sometimes that is literal – painting on an “I’m fine” face – before washing it off for the day.
Stigma, disclosure, and masking
Stigma – in all its forms – is a big factor influencing the decision to mask. According to sociologist Erving Goffman (1922-1982), those who are neurodivergent or living with mental illness will make a concerted effort to hide their symptoms – or to be “discredited” by others. Even by today’s standards, where conversations about mental health are increasingly common, many people feel reluctant to share. The same 2019 Ipsos survey of working Canadians found that 75 percent of respondents would be hesitant – or would refuse – to disclose a mental illness to an employer or co-worker due to stigma and fear of discrimination.
Goffman and others have noted how most people wear masks in their daily lives, in terms of trying to present themselves in certain ways in certain circumstances, such as on social media or at work. Putting your best foot forward isn’t the same as masking, however, where the goal is to suppress a key part of one’s identity.
For example, I experience this dilemma in another context – one of “coming out” as a lesbian, an identity that I constantly have to choose to disclose or not in a variety of situations. For example, in a conversation I can skirt around my life with my wife by cleverly using gender-nondescript language, but this brings with it a veil of inauthenticity.
Coming out about my mental illness (or not) feels similar. Do I let people in with vulnerability – or not? This is a decision that I am constantly having to make, and the solution varies with the situation, the people involved, how safe I feel, and my impression of how this “coming out” might result in negative consequences.
Chicken-and-egg situation
Without stigma, there would be little need to put on a mask to begin with, but to reduce stigma, there needs to be connections between people with lived experience of mental illnesses and other human beings – so which comes first?
While education, awareness campaigns, commemorative days, and articles like this one are effective to an extent, interpersonal contact is key according to a 2021 study in Society and Mental Health.
This, however, requires people with lived experiences to unmask, one person and one situation at a time. In other words, you need to reduce stigma to allow people to feel safe to unmask, but you need people to disclose their mental illness and unmask to reduce stigma. Chicken, meet egg.
To break that cycle, allies can play a role in creating the conditions where people feel safe to share their challenges and to open up about neurodivergence and mental illness.
For me, this year’s Mental Health Week theme is a call to action – to be my authentic high-functioning, high-performing self, and to also be okay to not be okay.
It’s also about not expending all my energy to maintain a perfectly painted mask, about not just saying “I’m fine” to make sure no one else is uncomfortable, but to feel free to say that I am struggling if I feel safe enough to do so.
When I get home from work and wash off my makeup, I want to have energy left for my family, my hobbies, and my wellness.
Outside of the home, I want to be in a world where I can take off my mask. I won’t be able to brave it every time, in every situation, and with every person – and that’s okay. The mask can be protective when the situation warrants, but little by little, unmasking can make meaningful connections to change minds.
Author: Jessica Ward-King, aka the StigmaCrusher, crushes the stigma of mental illness by being radically open about her experiences living with bipolar disorder.
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One year after the Mental Health Commission of Canada (MHCC) was created in 2007, the non-profit established its Youth Council, a program designed to engage younger adults (18 to 30) in the MHCC’s mission to improve the country’s mental healthcare system. At the time, the Youth Council program was ground-breaking in that it signalled a move towards involving people with different perspectives and lived experience in the project of changing attitudes about mental well-being and removing barriers to accessing mental healthcare treatment.
The MHCC’s Youth Council is, at its core, an advocacy group working to amplify the voices of younger people. It’s run by folks with a commitment to positive change and helmed by Em Alexander and Colbi Mike, the council’s current co-chairs.
Colbi Mike, a young Indigenous mother, documentary filmmaker and law student from the Treaty 6 Territory in central Saskatchewan, is focused on, among other things, dismantling barriers to maternal mental health and the effects of oppression on Indigenous peoples.
Em Alexander, a queer mother of two and First Nations person with European ancestry from Newfoundland and Labrador, is passionate about mental health advocacy, as well as supporting people who have experienced trauma and those facing systemic barriers to accessing quality care.
We asked the Youth Council’s co-chairs to share their thoughts about the challenges facing young people today and how mental healthcare systems can better meet the evolving needs of people dealing with the ever-changing stresses associated with contemporary times.
Acknowledge that challenges for younger generations of adults are unique
Em Alexander and Colbi Mike
Em Alexander: People my age grew up in a very different environment than our parents and grandparents, who didn’t experience the overwhelming influence of technologies like digital media. We grew up with constant exposure to world events, which can have a big impact on young peoples’ mental health and well-being. That difference makes it especially important for mental health programs to include young peoples’ perspectives and input to be successful, engaging and meaningful to the people they serve.
Colbi Mike: Youth today face extra challenges, from our economy to mental health struggles and substance use to systemic racism. Indigenous youth, in particular, carry the burden of intergenerational trauma, and ongoing discrimination and many Indigenous mothers—honestly, I would say all—encounter systemic racism. I guess it’s just a lack of understanding of who we are as Indigenous people and where we are currently in out societal healing.
Bring more young people into conversations about mental health
Colbi says: Youth bring fresh perspective, lived experience, and innovative ideas to the table and, since they’re directly impacted by policies and programs, their involvement ensures that initiatives are relevant, effective, and empowering. Ignoring their voices in the past has led to gaps in understanding our needs. Involving young people not only builds better programming, it also fosters a sense of belonging, leadership, and accountability among young people. I think it’s imperative to involve people who’ve lived in this age of this time, and to empower them with a voice, right now.
Em says: Incorporating the voices of young people is a critical step in program development, particularly for programs that aim to serve youth. The Youth Council was established in 2008, and I consider the MHCC to be a leader in the field when it comes to including young people and people with lived experience in meaningful ways in their program and policy work. It’s so important for young people to be involved in decisions that will impact them.
Give people with lived experience of mental illness a bigger role in decision-making
Em says: It goes right back to the saying “nothing about us without us,” really. If you’re creating or updating policy that is relevant to people with lived experience, then they should be involved in that process from the start. Would you want someone to design support for you without listening to your experience or what you need, or what has or hasn’t worked before? Of course not. To get it right, you need to include lived experience. This is incredibly important in policy work because it can have lasting impacts on services, access, quality of care, and other things.
Colbi says: It’s absolutely critical to hear more from people with lived experience. Policy affects real lives and those impacted should have a seat at the table. People with lived experience have insights that professionals and decision makers might overlook, and their involvement ensures that policies are not only practical but also inclusive. Engagement also builds trust, accountability, and long-term success.
As an Indigenous mother, I have first-hand knowledge in navigating challenges such as barriers, cultural disconnect, and limited support systems. My lived experience helped me approach issues of empathy, cultural awareness, and ensure that programs and policies are grounded in real-life struggles and successes.
Em adds: As co-chair, my lived experience, both personally and as a caregiver, plays a role in my approach. My goal is to approach leadership from a trauma-informed and recovery-oriented lens, and to uplift and value the intersectional identities and experiences that our members hold. It’s been a very meaningful role for me to hold over the last several years and we operate very well as a council with respect, trust, and support.
The next steps include raising awareness, education and funding
Colbi says: Education is essential for reconciliation. Healthcare professionals need to understand the lasting impacts of residential schools, colonial policies, and systemic oppression to provide culturally safe care. While there have been efforts to include this education in some curriculum, the process is slow and inconsistent. Call to action #24 (from the Truth and Reconciliation Commission of Canada’s 94 Calls to Action) emphasizes that this is a priority, but we still need more accountability to ensure all healthcare workers are equipped to support Indigenous patients with respect and understanding.
Em says: From my own experience working at the intersection of non-profit and mental health sectors, there needs to be more support for the mental health workforce. We’re starting to see more awareness when it comes to that problem, but one of the biggest challenges I still see is good people wanting to be able to do more to help but, at a systemic level, not having the resources or capacity to do so. Sometimes this comes down to cost of services, access, wait times, or eligibility, but there’s no shortage of people wanting to support others. I sincerely hope that funding will be maintained for mental health care and related programs and initiatives throughout transitions in political governance.
We all have a role to play when it comes to providing support for people in need
Em says: When people are reaching out for support, don’t assume their identities, or their needs, or experiences – ask them, and listen with the intent to learn. It’s a challenging time right now, particularly for members of the 2SLGBTQI+ community. There are very real threats to safety for our community created by the hate and ignorance outside of our borders—and here in Canada, too. Check in on the people in your life from these groups because they are being targeted right now—BIPOC communities, 2SLGBTQI+ communities, immigrants/refugees, and others—and they need all the support they can get.
Colbi says: Mental health is deeply tied to the well-being of families and communities and yet mothers often face stigma, isolation, and limited access to safe mental health services. It’s important, therefore, to support mothers by investing in accessible and appropriate mental health care, childcare, and transportation.
We also need to keep creating programs that integrate cultural teachings and community support, because, for Indigenous people, healing often comes through reconnecting with our culture, language and communities. Investing in these areas can strengthen resilience and identity for future generations.
Author: Christine Sismondo, PhD, is a historian who writes about social issues. Her work is featured regularly in the Globe and Mail, and the Toronto Star. She is a National Magazine Award winner and the author of several books.
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This article is part of the Catalyst series called Language Matters on terminology and usage.
Like the problem of homelessness itself, the issue of language around homelessness is complex and multifaceted, with researchers, experts, and those with lived experience asking if there is a different way of talking and thinking about housing that would drive the conversation rather than mire it in stigma, prejudice, and discrimination. Like those experiencing housing insecurity – something that can be viewed on a spectrum of risk in terms of access to and maintaining shelter – there is no one right answer.
The term homelessness can broadly encompass “the situation of an individual, family, or community without stable, safe, permanent, appropriate housing, or the immediate prospect means and ability of acquiring it,” according to The Canadian Observatory on Homelessness.
This can refer to those who are living in emergency shelters, couch surfing, living in encampments, those who are living in environments not intended for human habitation (such as cars, garages, or makeshift shelters), and those at risk of moving to these living arrangements. The definition encompasses not only income and housing, but also access to employment, health care, clean water and sanitation, schools, and childcare.
Word choice
The words we use do not, themselves, change the experience or impact of homelessness – but they can shape the conversation. For example, terms such as “houseless” or “unhoused” are emerging to place the emphasis away from the individual, and toward the bigger problem – a lack of affordable housing, something that is of great concern to 45 percent of people in Canada, as of late 2024 reporting from the Canadian Social Survey.
Al Wiebe knows these concerns. He is a housing advocate in Winnipeg who has experienced homelessness and describes himself as having no fixed address. He uses the word “homeless” to describe his experiences because, “a house is just a shelter, a roof over your head,” he says, noting that some people living in encampments, for example, may feel they have a “home” even though they are without a traditional “house.”
Further, Wiebe notes that more than 31 percent of homeless people come from Indigenous communities, with many people from within those communities noting that “unhoused” or “houseless” are more appropriate terms for those who may consider Earth their home.
Person-centred language
This term aligns with person-first language – something that focuses on the individual. For example, in the case of mental health conditions, you could describe a person as living with schizophrenia as opposed to “having” or “being” an illness, disability, or condition. In the case of housing – a lack of affordable options is the problem – not the person.
Pearl Eliadis talks about this nuance in “Turning Off the Tap: Preventing Homelessness for Victims of Violence,” her chapter in Ending Homelessness in Canada: The Case for Homelessness Prevention (2024), edited by James Hughes.
Eliadis is an associate professor at McGill University and a lawyer with more than a decade of experience, including work with the United Nations and the Canadian Human Rights Commission. She was working with Melpa Kamateros on a research project in 2021 as part of the Quebec Homelessness Prevention Policy Collaborative. At the outset, they were having a conversation on language.
Kamateros – co-founder and executive director of Montreal’s Shield of Athena Family Services – offering emergency shelter for those experiencing intimate partner violence – says care is needed in the use of the term.
“These women are not homeless, at least not as long as they are with our shelter!” Kamateros explains to Eliadis, who writes: “There is a feminist argument at play here: framing the experience of a woman fleeing violence as ‘homelessness’ places the focus of the policy problem on her; it reframes who she is, even though her circumstances were the product of someone else’s violence. The woman may be temporarily unhoused, but that does not make her ‘homeless’.”
Evolving ideas
Some sources, such as Regeneration Outreach in Brampton, Ontario use “homeless” to refer to someone with no fixed address and “houseless” to refer to someone who does not have a traditional home, but does have a place to stay, such as an RV or other non-permanent structure. Blanchet House in Portland, Oregon uses both “houseless” and “unhoused” interchangeably over the more stigmatized term, “homeless.”
However, as advocates are noting, changing the terms may eclipse the bigger issues.
“Even the benefit of switching from a word loaded with negative connotations to one that is denotationally the same thing but without those connotations only has a negligible benefit that lasts a few years, until stigma grows on the new word too,” wrote Frances Koziar, a young, disabled, retiree, and a social justice activist living in Kingston, Ontario in an Ottawa Citizen op-ed.
While language continues to evolve, it is only one part of a much larger issue. The debate over terminology should not be used as a form of virtue signaling without meaningful efforts to tackle the deeper challenges of housing affordability, mental health, and substance use.
Further reading: A Roof of One’s Own: The lack of housing options brings its own kind of homesick feeling.
Jessica Ward-King researches and writes as The StigmaCrusher. She feels most at home when learning about and advocating for mental health.
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If you’re in certain filter bubbles, it can feel like mental health is everywhere. “So many people are consuming mental health information, but without a critical eye,” says Jessica Ward-King a self-described fierce mental health advocate with a PhD in experimental psychology who uses the moniker The StigmaCrusher (“heavily educated and heavily medicated”). She uses online talk therapy and also finds information through TikTok and YouTube. “I consider that e-mental health too,” she says. Ward-King informs her influence with research from her doctoral studies, her lived experience with bipolar disorder, and other evidence-based sources, but this isn’t necessarily the norm for online mental health.
Technology is undoubtedly transforming the way people in Canada receive health care with countless applications, influencers, and digital tools popping up everywhere, but how does one sort through the many options?
“E-mental health services in Canada provide crucial benefits—offering anonymity, reducing stigma, and allowing people to access support in ways that work for them,” says Maureen Abbott, Director of Innovation at the Mental Health Commission of Canada. “Whether it’s the flexibility of choosing their own time and format or the ability to find help in urgent moments when in-person services are unavailable, e-mental is transforming mental health care. One individual shared with us that accessing a peer support group in the middle of the night literally saved their life,” Abbott says.
Maureen Abbott, Director of Innovation at the Mental Health Commission of Canada at the Electronic Mental Health International Collaborative (eMHIC) conference in Ottawa in September, where the strategy was launched. With countless e-mental health solutions available, clear guidelines are essential to ensure clinical quality, user safety, and data security. Photo: eMHIC.
A strategy for the future
The Mental Health Commission of Canada launched Canada’s first E-Mental Health Strategy in 2024. It provides guidance for the development of e-mental health with emphasis on clinical safety, frameworks for data collection and retention, and culturally appropriate care.
“While e-mental health services offer many advantages, challenges like privacy and service quality must also be addressed. That’s why the Mental Health Commission of Canada, with the support of Mental Health Research Canada, developed a national strategy—shaped by a diverse advisory committee, with more than half the committee comprised of those with lived experience of mental health challenges,” Abbott says. “This guiding star document sets priorities for the future of digital mental health, ensuring meaningful engagement and collaboration across the sector.”
By supporting those creating e-mental health policies and solutions, the MHCC can inspire and improve the field at a systemic level ensuring that best practices cascade through to app developers, policy makers, and healthcare leaders and empower them to establish and adopt standards that will improve user outcomes.
In this way, it is a strategy that meets people where they are – because e-mental health keeps growing. According to the American Psychological Association, in 2021, more than 20,000 mental health apps were available on the market.
The proliferation is bound to continue because e-mental health tools can offer greater choice, convenience, lower cost, and, in some cases, higher-quality care than traditional services, according to an editorial called The “Uberisation” of Mental Health Care: A Welcome Global Phenomenon? by Ian Hickie, professor of psychiatry, Brain and Mind Centre, University of Sydney, Australia.
“If those with lived experience and research capacity in this field don’t respond appropriately, it leaves room for others to step in to respond consumer priorities: access, choice, competitive pricing, and user experience. Worldwide, demand for personalized mental health services far outstrips supply,” Hickie writes.
Here in Canada, the E-Mental Health Strategy serves as a blueprint, offering six recommendations and 12 priorities to chart the future direction of development of e-mental health in Canada and drive innovation – with consideration.
For example, one priority is to address the quality of e-mental health solutions and services, including privacy and data protection concerns. The strategy references the First Nations principles of ownership, control, access, and possession to guide health leaders, provinces and territories, jurisdictions, community organizations, and researchers around consent, collection, and data sovereignty.
“Trust is at the heart of e-mental health,” says Michel Rodrigue, president and CEO of the Mental Health Commission of Canada. “The efficacy and safety of e-mental health apps and supports should be paramount. People in Canada need assurance that these options meet the highest standards of safety and quality, prioritize equity-first data governance, maintain confidentiality, and include the perspectives of people with lived experience of mental health challenges.”
Stigma Crusher Jessica Ward-King notes that when people are in the midst of a crisis or struggling with their mental health, they may not be necessarily asking about how their data is being managed.
“Privacy is a huge concern that many don’t even think about,” she says. “Safety is another big issue. If a chatbot responds to suicidal thoughts, what protection is in place? If you’re getting advice from someone who doesn’t know your medications, what’s the risk there? A strategy makes sure someone is asking those questions before they become problems.”
Some of the recommendations in the strategy touch on issues of workforce and user readiness. People want help determining the quality and safety of options when there are so many options and no common standard. As e-mental health solutions continue to improve in quality and efficacy, there needs to be a means of communicating about evidence-based solutions with practitioners and to prove that they are both safe and efficacious.
With the speed of change, the e-mental health community is calling for specific guidelines related to AI use in mental health care; something that goes deeper than existing domestic and provincial guidelines and standards on the ethical use of AI in Canada.
Throughout the strategy-development consultations, the creation of a mental health app library and assessment process was one of the most discussed topics among both international experts and domestic collaborators. A database for assessed apps and a national assessment process would directly address some of the largest issues facing e-mental health in Canada, along with ongoing reviews and updates of best practice guidelines, since technology, legislation, and research evidence are constantly changing, particularly in relation to data security and privacy standards.
Addressing risks and readiness
E-mental health can offer access to care for people in rural areas who may not be able to travel to a care provider. It allows people to find culturally appropriate care for their situation, preserves privacy, and is usually less expensive than in-person services – for both the provider and the user. During the peak period of the pandemic, electronic mental health solutions allowed people to access care while physically distancing, isolating, or recovering from COVID-19.
Virtual consultations for mental health, substance use, and healthcare services went up during the spring and summer of 2022, with nearly three in five people in Canada accessing care this way, according to Statistics Canada.
According to a 2021 Canada Health Infoway survey, 63 percent of people said they would not have sought mental health care if virtual options had not been available.
Shaleen Jones knows this firsthand. She is the founder and executive director of Eating Disorders Nova Scotia, a community-based charitable organization that offers all of its services without a referral or a diagnosis.
Like many organizations, Eating Disorders Nova Scotia became 100 percent virtual in 2020, delivering all their services, supports, and training online, something that allowed the organization to expand its reach, says Jones.
“Technology is really a tool that allows us to connect with others – I believe it is that personal connection that has the greatest impact,” she says. “Like any new tool, thoughtfulness in how it is utilized is critical. The MHCC e-mental health strategy serves to identify potential challenges and strategies as we work to chart the future course of e-mental health services in Canada.”
Canada’s First E-Mental Health Strategy: The Six Priorities
- Improve perception, awareness, and engagement in e-mental health.
- Develop resources for evaluating the effectiveness of e-mental health solutions and programs.
- Address the quality of e-mental health solutions and services, including privacy and data protection concerns.
- Reduce barriers and address system challenges to e-mental health solution adoption.
- Embed IDEA (inclusion, diversity, equity, and accessibility) principles in all e-mental health development, tools, and delivery.
- Support the mental health workforce to integrate e-mental health into their practice.
Canada’s First E-Mental Health Strategy: The 12 Recommendations
- Advance the development and promotion of a readiness assessment tool for service providers.
- Develop and launch comprehensive e-mental health training for the mental health workforce.
- Advance and promote a best-practice guideline for using e-mental health tools.
- Increase safety with the use of artificial intelligence in mental health care.
- Develop a national mental health app library.
- Establish a champions network.
- Develop a navigation site and public awareness campaign for quality e-mental health solutions.
- Leverage e-mental health to support the continued utilization of interdisciplinary health-care teams, including mental health professionals.
- Consider the role of e-mental health in Canada’s high-speed bandwidth initiatives.
- Invest in the development of e-mental health solutions for a spectrum of intensity of services.
- Allow for e-mental health solutions in all funding models for provincial and territorial health systems.
- Advance interoperability of mental health data between providers and personal data ownership.
Further reading: Find the strategy in full.
Resource: E-Mental Health: What is the Issue?
Author: Fateema Sayani is the manager of content at the Mental Health Commission of Canada.
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Debra Slater is the type of person you want looking after your loved ones. A self-proclaimed born nurturer, she took care of her grandmother in Saint Vincent and the Grenadines and went to school to become a personal support worker (PSW) after moving to Canada. Slater loves talking to and learning from the older adults under her watch at a long-term care home on the outskirts of Toronto. She greets them by name, with eye contact and a smile, and strives to develop a rapport regardless of their cognitive condition. She treats clients as individuals while helping with activities of daily living – often referred to as “ADLs” in support work communities – such as bathing, getting dressed, and eating.
“You need to take time to understand their emotions and feelings,” says Slater, who has worked as a PSW on and off for more than 20 years. “You kind of become their family. They’re not ‘my patients.’ They’re people who want to be as independent as possible and this is their home. My job is to bring comfort and peace, love and companionship. It’s a whole vibe.”
Debra Slater, a personal support worker, also coordinates the Empower PSW Network to advocate for better working conditions.
Slater maintains this attitude even though, on a typical shift, she has eight residents with diverse needs to juggle. One might have had a rough night; another could be dealing with a medical issue; and if any of Slater’s colleagues are absent, she’ll probably have additional clients. “On a difficult day, you have to work harder to be present,” says Slater, reflecting on all the de-escalation and problem solving she must do. “That takes a toll. My mental health is a roller coaster.”
Many care providers are in this profession because they have similar nurturing mindsets, yet 80 percent have considered changing careers, according to a report published last year by the Canadian Centre for Caregiving Excellence (CCCE).
Across the country, PSWs, direct support professionals (DSPs) – who work with clients with disabilities – and other paid health-care attendants are feeling stressed, overworked, and underpaid. The labour pool consists largely of racialized women, many of whom are newcomers to Canada, and they face high rates of abuse and discrimination on the job.
Working in congregative living facilities and providing home care for a patchwork of public and private employers, the majority are essentially gig workers without benefits such as paid sick days or access to counselling.
Fewer than half of the PSWs surveyed by the joint University of Toronto and St. Michael’s Hospital-based Upstream Lab said their health was good or excellent, which is lower than the national average. More than 20 percent likely had some form of depressive disorder, the researchers concluded in a 2022 paper, “significantly exceeding the prevalence of major depressive episodes among Canadians.”
In a country with an aging population, this is a significant challenge. If we don’t take care of PSWs and other care providers, how can they be expected to look after our most vulnerable citizens?
Risky business
More than 650 PSWs in the Greater Toronto Area responded to the Upstream Lab survey, which found that:
- 97% are born outside Canada.
- 86% are precariously employed.
- 89% lacked paid sick days.
- 90% are women.
- Many are casual employees, with wages that range from $17 per hour in home or community care to $25 per hour in public long-term care facilities.
This snapshot is representative of care providers across the country, according to the Upstream Lab paper, and their precarity is “significantly associated with higher risk of depression.”
Health-care jobs in Canada have traditionally been secure, but over the last three decades, “disparities in pay and work conditions have grown between registered professionals (such as physicians, nurses) and other staff whose jobs are part-time, temporary, on contract and not unionized,” the researchers wrote. A national focus on discharging people from acute care and aging in place has ramped up the demand for PSWs, who now constitute about 10 percent of all health-care workers. This workforce grew relatively quickly, says Upstream Lab director Dr. Andrew Pinto, without much scrutiny or consideration of the consequences.
These poor working conditions can be detrimental to physical and mental health, says Dr. Pinto, who, in addition to his role as a public health specialist, is also a family physician. In a system that incentivizes “reducing costs” and “doing more with less,” he says that many PSWs fear reprisal from their employers if they raise concerns about problems on the job. Pinto knows this from his research, and from the PSW patients he sees as a physician. “They’re really dedicated to caring for others and take pride in their work,” he says, “but they’re not given the respect they deserve.”
Dr. Andrew Pinto: Better working conditions lead to better health outcomes. Photo by: Upstream Lab
Despite economic and demographic pressures, Pinto believes this system can be reformed. Because it’s funded predominantly by the public, a collective push for “a basic set of rights” — living wages, paid sick days, access to health resources, opportunities to flag systemic issues — will improve conditions for care providers, whether they work for government or private employers. “The public doesn’t want gig workers looking after their loved ones,” says Pinto. “Better quality jobs will not only improve the health of PSWs, they will also improve care and health outcomes for all Canadians.”
To continue the campaign for policy reform, the Upstream Lab’s research project has spawned the Empower PSW Network, a coalition of care providers seeking to raise awareness and advocate for change. Slater, the network’s coordinator, says that foremost, PSWs need more structured support. “It’s not the work that’s the problem — it’s how we’re treated.”
The silent treatment
Liv Mendelsohn, executive director of the CCCE, knows PSWs who live in their cars because they can’t afford housing. She’s heard stories about the stress of rushing between nursing homes and private residences from PSWs who cobble together gigs. “We rely on them to provide really intimate care,” she says, “but we don’t do enough to support their health.” Moreover, because a care provider’s permission to be in Canada can be tied to a particular employer, they often remain silent when facing discrimination or exploitative situations.
The CCCE has called on the federal government to implement a $25 per hour minimum wage for all PSWs. Mendelsohn also emphasizes the need for consistent benefits to prevent burnout and reduce the number of PSWs migrating to jobs in acute care for more stability. Despite the scale of this transformation, she’s hopeful. “We can’t not improve things,” she says. “There’s no way our system can continue without better support for PSWs.
“We don’t just need bodies,” adds Mendelsohn, envisioning a new era in which, for example, a senior with dementia is cared for by the same provider every day, improving their quality of life. “We need skilled, compassionate people and we need to acknowledge that they’re a critical part of our health-care system.”
In a different world, Kezia (last name withheld to protect her employment prospects) could have been one of those providers. Born in India and raised in the Bahamas, she moved to Prince Edward Island for university and supported herself by working as a DSP and PSW. Kezia assisted with ADL, cooked, cleaned, and accompanied clients to day programs and medical appointments. The learning curve was steep, but with supportive co-workers, she got into a groove. “We tried to foster a feeling of being at home,” she says. “After a while, it felt like a calling.”
But Kezia, who was in her early 20s at the time, also experienced racism and inappropriate sexual comments. Telling her manager about problems “was like hitting into a wall.” She felt unappreciated by her employers, even after working a 16-hour shift. If she missed a shift, she didn’t get paid, which meant she might not have enough money for rent or groceries. Exhausted, she was neglecting her own health. After three years, Kezia left the profession.
“If we were treated better, I might have stayed,” she says. “PSWs are the backbone of our health-care system, but I can never go back to working in the that field.” Instead, Kezia is going to school again. She’s studying to become a nurse.
Further reading: Mental Health at Work: It Matters: How to Start the Conversation.
Learn more: Caregiver resources from the Canadian Centre for Caregiving Excellence (CCCE).
