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Older adults are more likely to suffer from social isolation and loneliness is increasingly being recognized as being bad for our health. The good news is that mattering and belonging can flip the script. Our series explores these and other related concepts.
Some get frustrated by the feeling of “invisibility” that many older adults experience. Others, though, consider it their super-power.
“The feeling of being invisible comes up in the hit show Matlock, with Kathy Bates, where she says that, as women get older, they ‘become damn near invisible’,” says Dr. Gordon Flett, Honorary President of the Canadian Psychological Association 2024-2025 and former York University Canada Research Chair. “And then she goes on to say that she can use that to her advantage because people don’t see her coming.”
Not everyone is able to find a silver lining in the cloud of invisibility, probably because “feeling seen” is an important part of feeling like you matter to the world around you. And “mattering” is important to our well-being, according to Flett’s research, which has shown that feeling like you matter is associated with resiliency. Conversely, “anti-mattering” is connected to stigma, discrimination, psychological distress, depression, and loneliness. “Feeling invisible to others is at the heart of anti-mattering,” says Flett.
Although some older men complain that they feel invisible on occasion, the phenomenon is so widely felt for women over 50 that it’s been dubbed the “Invisible Woman Syndrome.” What this suggests is that stigma for older adults isn’t only a matter of age. We also experience age stigma in relation to our intersectional identities—class, ethnicity, gender, religious beliefs, and other identity markers.
Kathy Bates stars as the brilliant septuagenarian Madeline Matlock in drama series, MATLOCK, inspired by the classic television series of the same name. Madeline achieved success in her younger years and decides to rejoin the work force at a prestigious law firm, where she uses her unassuming demeanor and wily tactics to win cases and expose corruption from within. Photo: Brooke Palmer/CBS via Getty Images.
Who turned on the cloaking device?
For this reason, Dr. Susan Braedley, Professor at Carleton University’s School of Social Work, says that, after fifteen years of studying long-term care and age-friendly communities in national and international research projects, one of her teams’ key findings is that inclusivity must guide the planning and designing for care homes, retirement communities, and programming for older adults.
“We’ve seen a lot of promising practices,” says Dr. Braedley. “And then we’ve seen some things to avoid, things that caused great distress to older adults.”
For example, she recalls a day program designed for people with mild cognitive impairment in a Canadian community where many residents’ first language was Mandarin. Personal support workers didn’t speak Mandarin, and the activities all assumed that participants were familiar with mainstream Canadian customs and holidays.
“If you think you’re supposed to know the answers but don’t, it can be really confusing, because you start to think your memory is worse than it is,” Dr. Braedley explains. “The program produced a lot of anxiety. It was supposed to reduce social isolation for people living with dementia and, actually, I think it was having the opposite effect. Cut-and-paste programs don’t work.”
It’s not all bad news, though. In the course of her research, Dr. Braedley observed scores of programs that were culturally appropriate, community-based, and well-designed for the actual participants. And, in those spaces, Dr. Braedley witnessed and, herself, felt, a lot of joy. One of her many favourites was a program offered at the 519, a non-profit agency in Toronto that serves 2SLGBTQI+ communities. This program matched younger volunteers from the community with older adults experiencing loneliness.
“The older people had amazing experiences, sometimes just by having someone to help them negotiate the city when they were feeling uncertain about being out on their own,” she says. “But what was so interesting is that many of the younger people were working remotely and were saying, ‘We’re lonely, too. We’re isolated’.”
Eddy Elmer, a Vancouver gerontologist and research consultant specializing in aging and mental health, says that older people from 2SLGBTQI+ communities are far more likely to be socially isolated and lonely.
“Some of it’s just because it’s a smaller population base, so it’s harder to meet people or find a partner,” says Elmer. “LGBT people over the age of 70 also grew up at a time when being gay was highly stigmatized. It was illegal, it was criminalized, and it was pathologized, so they’re more afraid of being rejected and discriminated against.”
Elmer fears that we’re taking steps backwards now, with changes in our online climate, and a general rise in anti-2SLGBTQI+ sentiment. As such, he warns that risks are on the rise, particularly for transgender older adults.
The mysterious case of the vanishing older adult
Older people experiencing income insecurity, homelessness, incarceration, or pre-existing depression all tend to be more vulnerable, as are older men who have recently experienced a life transition, such as retirement. Some attribute this to the fact that, broadly speaking, women have larger social networks. When men stop working, by contrast, many lose their most important social space.
For many, though, it’s also about a shift in self-perception and a loss of identity.
“People are saying to me, ‘I was a high school principal, or a professor, or a lawyer and I had all these different roles and identities’,” says Dr. Raza Mirza, Director, National Partnerships for HelpAge Canada. “And then they retire, and their perception is that ‘Now all I’m seen as is as an older person and we’re all kind of lumped into this one big group. That’s my identity now’.”
One of Mirza’s many research projects aimed at helping older adults is a study with Men’s Sheds Canada of called “Men’s Sheds,” a program designed to help people establish new roles as mentors in society and connect and engage with other men of all ages.
“The idea is to empower older men,” he says. “It’s also about health promotion, though, because they can talk to one another through life transitions, share resources and share information that impacts the mental and physical well-being of older men.”
That could have a serious impact given that, simple preventative measures and screening can make a big difference when it comes to the social, mental, and physical health of older adults. Hearing aids and eyeglasses, for example, are a low-intervention way to reduce social isolation and improve well-being.
“Sensory loss is very important because many older adults have hearing or vision problems,” says Dr. Fereshteh Mehrabi, post-doctoral research fellow in Concordia University’s department of psychology. “Dramatic hearing loss is much more prevalent among men than women and, often, they choose not to even try to communicate of socialize at all because it seems like too much of a bother, which can contribute to frailty over time, as reduced communication and social engagement may lead to physical decline and isolation.”
Seen, heard, and invited to the party
There’s some debate about why older men experience hearing loss, but there’s little doubt as to why many older men don’t want to use a hearing aid, namely, because that’s associated with older people. In other words, people often choose to withdraw from the world rather than deal with age stigma. (Incidentally, the new generation of hearing aids are far more discreet, and the tech allows users to do neat things like tune out ambient noise to focus on the person speaking, which, if you think about it, sounds like a good superpower to have).
Older women aren’t immune to hearing problems, but, by the numbers, Mehrabi says that, for women, screening for and preventing frailty should be the top priority. Women are far more likely to experience frailty than men and her recent study, published in Age and Ageing found that, over a long-term period, frailty leads to social isolation and loneliness, perhaps for the simple reason that it’s harder to go out and join in social and physical activities. It doesn’t help that, even though women’s fitness is a massive growth industry, there are plenty of cultural and systemic barriers keeping older women from building muscle with good diets and resistance exercises.
“The perfect neoliberal older person has enough money to last them the rest of their life and is using their Fitbit to keep them active and healthy,” says Dr. Braedley. “The idea is that we have so much control and we can keep ourselves healthy if we eat right and do all the good things. Which is ridiculous because we all die.”
“Many, many people, and disproportionately women, don’t fall into that model of the perfect, self-reliant, older person,” she adds. “So, I think it’s about that. I think it’s about classism, sexism, racism, and ableism all combined.”
Back to those invisible women, it’s important to note that it can feel like a superpower for some, but it’s damaging to others. “The older person who feels invisible and comes from a marginalized background will not see being invisible as having any sort of benefit,” says Flett. “For folks experiencing co-occurring injustice, inequity and invisibility, that’s a very painful combination.”
That makes it everyone’s responsibility to find a way to make people secure in the knowledge that they matter—no matter what their age.
Author: Christine Sismondo is a Toronto writer who hopes to one day live with friends in a communal living project modelled after The Golden Girls. We still need a cheerful character like Rose Nyland to join the collective and entertain us with her stories. And, it almost doesn’t need saying, but Kathy Bates is always welcome!
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Older adults are more likely to suffer from social isolation. Loneliness is increasingly being recognized as being bad for our health. The good news is that mattering and belonging can flip the script. Our series explores these and other related concepts.
“I think I was 50 the first time a younger person in the office asked me when I was going to retire,” recalls Pamela, a 62-year-old government employee who lives in Edmonton. “He said it was high time people like me got out of the way to make room for people like him.”
Pamela, a pseudonym to protect her identity, has worked for the same department since the mid-1990s. She’s qualified, knows all the ins and outs and, according to her, actually trained her last two bosses for roles she applied for. She never even got an interview. She recently filed a workplace discrimination complaint against her employer, because she believes she’s the victim of ageism.
“Being constantly passed over for promotions is frustrating,” says Pamela. “Worse than that, though, is being made to feel like you’re a burden.”
Dr. Alison Chasteen, a social psychologist at the University of Toronto.
Pamela isn’t alone. A recent Employment and Social Development Canada survey found that almost half of respondents 55 or older felt they had experienced ageism, a form of discrimination that the World Health Organization says is one of the “most socially normalized.” Not only is age stigma prevalent, but it can also damage older adults’ abilities, says Dr. Alison Chasteen, a social psychologist at the University of Toronto.
“If you activate negative stereotypes in older peoples’ minds, that can elevate a cardiovascular stress response that can also affect memory function, so they don’t do as well on, say, a free recall test where you have to recall a list of items,” says Dr. Chasteen, noting that it’s also been shown to impact motor function.
Fixed mindsets
Internalizing negative stereotypes to the point that they feel like they define our characters isn’t unique to older adults experiencing ageism. Self-stigmatization is a common phenomenon that runs across all forms of stigma but, when it comes to ageism, there’s another layer, because older adults may, themselves, have held negative ideas about ageing when they were younger.
Given how pervasive and complicated age stigma is, an essential first step in tackling it is to stop using terms that carry negative connotations, such as “the aged,” “old-old,” “senior citizens” and “the elderly.” These imply a fixed identity and/or evoke images of frailty. By contrast, the term “older adult” reminds us that age is relative and ever-changing.
“Really what we’re talking about here is ageism,” says Katie Ellis, Program Manager at the Mental Health Commission of Canada, who recently led a research project on mental health and older adults in Canada. “Using language with negative associations really does have a negative impact on quality of life, because stigma can stop people from thinking they can get better access to care or participate in certain activities.”
Stigma and social exclusion go hand in hand. Pamela says that, even though she’s resisting the push for her to quietly retire from her life-long career, she’s often left out of after-work gatherings and finds that holiday parties can be awkward because she’s not in the cool kid crowd. She’s lucky to have good friends outside of work, but it’s easy to see why age stigma is closely associated with mood disorders, diminished well-being, and feeling less inclined to seek medical treatment, as well as loneliness and social isolation.
Mental Health Commission of Canada program manager Katie Ellis led a research project on older adults and mental health. Stigma can lead to a negative impact on quality of life.
Mattering and belonging – what’s the difference?
“I think the big thing with discrimination and prejudice and stigma is that you’re no longer seen as a unique person with valued attributes,” says Gordon Flett, Honorary President of the Canadian Psychological Association 2024-2025 and former York University Canada Research Chair. “A key element of ‘mattering’ is just being seen as an individual with valued attributes and, instead, you’re seen according to a prescribed box that you’re put into, and you feel unvalued or devalued.”
“Mattering” shares a lot of space with the idea of “belonging” but takes it a step further. It’s possible to belong to a club but still feel unimportant. Mattering means that people value your contributions and, simply enough, you matter. That sense of purpose and meaning seems to offer protective qualities, since it’s correlated with resilience and better health outcomes. Anti-mattering, on the other hand, is closely associated with discrimination and stigma.
“Anti-mattering is so destructive because it means treating people like they’re insignificant or invisible or unseen, unheard and unvalued,” Flett explains.
It’s hard to get people to see beyond stereotypes if you rarely, if ever, interact with people outside of your generation, though. Few Canadians do, since “age bubbles” define a lot of peoples’ social lives. As ageist as some workplaces may be, it’s not uncommon for people from different generations to work on projects together on the job site. By contrast, many social spaces are often tightly age-segregated in ways we don’t always even notice.
“I went to a wedding with my sister and my mother recently and we expected to spend the evening together,” says Dr. Raza Mirza, Director, National Partnerships for HelpAge Canada. “But my mother was sat at a table with older adults, and I was sat at a table with younger people who I didn’t have anything in common with. I would have far preferred to sit with my mother.”
The assumption that older adults only want to talk to people their own age is particularly striking to Mirza, whose career is focused on fighting age segregation through intergenerational projects. Although many are in their infancy, there are a lot of pretty cool projects aimed at getting people out of their age bubbles.
In Alberta, the Canadian Alliance for Intergenerational Living launched a pilot project last year that placed students looking for affordable housing into retirement communities in exchange for leading classes in, say, art, scholarship, or fitness.
St. Lawrence, a school in Champlain, Quebec, arranges intergenerational living situations by offering students two meals a day and free lodging in a residence for older adults in exchange for 10 hours of volunteer work in the home per week.
Vancouver’s Volunteer Grandparents has a “Family Match” program that sees older adults sign up to help mentor kids whose biological grandparents can’t play active roles in their lives. Ontario resident Heather Walker wanted to take part in the program but was too far away, so they made her a pen pal to a 15-year-old.
“She seemed like a younger me,” says Walker, who will celebrate her 70th birthday this summer. “Her passions were writing, and social justice and I had so many questions, my letter back was five pages long.”
Now she has a new role as a pen pal with an entire class in an elementary school. She helps them with things like sentence structure and sends them Valentine’s Day cards and other special treats.
Burst your bubble
One of the better-known age bubble-bursting projects is Raza Mirza’s “Intergenerational Classroom,” an initiative that sees a third-year University of Toronto Ageing and Health class pop up in a common room at Christie Gardens, a Toronto retirement community and long-term care home. Students and residents take the class together for the entire semester.
“It’s been highly, highly successful, because we facilitated a platform where people can feel valued,” says Mirza. “We keep hearing that people felt they had a role, felt that their contributions were meaningful, and felt a sense of belonging. But there was also reciprocity, so it wasn’t this older person who was just the recipient of information or sharing information. There was this back-and-forth exchange.”
Nobody gets stuck in the corner at the kids’ table, either. Everyone has a chance to break out of their age bubble and get to be seen as a unique person. It’s a fabulous model showing a path forward for us to fight against stigma, negative stereotypes, and anti-mattering. And, in fact, it might even help people re-define what “being old” means.
“We’ll start the class by asking the students, ‘At what age do you think a person is old?’,” says Mirza. “People say things like 40 or 50 or 60. Then, after being in the class and listening to older adults for 12 weeks we ask them the question again. They say things like, ‘I’m not sure’ or ‘I think old is a perception or a feeling.’ They focus on the similarities they have and the things that they have in common,” he adds. “They don’t focus on the age difference anymore.”
Resource: A free course on dismantling structural stigma in health care aims for meaningful change for people experiencing mental health and substance use issues.
Author: Christine Sismondo is a Toronto writer who hopes to one day live with friends in a communal living project modelled after The Golden Girls. In a perfect world, there’d be someone like Sophia in residence, because intergen living is the best.
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The other day I was walking down the street when my foot hit a divot in the pavement, and I went over on my ankle. I heard – or maybe felt – a snap. My ankle started swelling almost immediately. To the emergency room I went and as I whiled away the hours scrolling, watching videos, and playing word games I watched my phone’s battery dwindle and eventually I was “in the red.” Uh-oh! I needed my phone to call a ride when my ER ordeal was done! With no hope of seeing the doctor soon and no charger in my pocket there was nothing I could do but give the phone a rest and turn it off.
Wouldn’t it have been magical if, when I turned it back on two hours later, instead of finding my battery at 8% it had recovered its charge up to 50%? Wouldn’t it be great if just giving my phone a rest would also recharge its battery?
Alas, that is not how it works – for phones or for people either. Rest is not the same thing as recovery. I need to recharge my phone if I expect its battery life to recover. I need to plug it in if I hope to recharge its battery. Luckily with a phone it is a very simple and linear process – we know exactly what to do when our phone’s battery is in the red. But what do we do when our own “batteries” need to recharge?
Self-care is the obvious answer to mental health recovery, but it isn’t as obvious what self-care looks like, because it looks completely different for different individuals. In fact, self-care is often maligned as an airy-fairy concept, awash with adult colouring books, meditation apps and yoga poses – and if those are your things, then great! But self-care can be and is so much more.
Some people (like introverts) recharge their batteries solo or with smaller group activities – reading, crafting or solo exercise. Others (like extroverts) find they recover better when they can feed off the energies of others and prefer to recharge in the presence of other people – parties, group activities and team sports. However, there are some all-round solutions if you are looking for ways to recover.
Taking care of your body with sleep, exercise and nutrition is a must. We all know this. But there are a lot of moving parts here! When you are in need of recovery it can be overwhelming to see the catalogue of things you are “doing wrong” in this department, and that is not the goal. The goal is to choose practices that recharge your energies, not deplete them. And so, beginning a practice of good sleep hygiene or drinking more water might be more manageable. Don’t try to change everything at once and make it perfect – there is no such thing anyway. Just do something good for your body to help it rest and recover and celebrate that!
Experiencing nature is another powerful way to recharge your batteries. This is one self-care tip that becomes easier as the leaves and flowers bloom. Taking a nature walk or forest-bathing can help but even just sitting in your back garden or eating lunch on a park bench is enough to help restore balance.
These self-care tips are helpful in recovering your mental health, but these are not the tips that will lead you to recovery with mental illness. Medications, talk therapy and a good therapeutic alliance with your caregivers as well as peer support will help with that. And the road to recovery with mental illness is a long and non-linear process. But that process will be augmented by a self-care routine that keeps your batteries charged, giving you the energy to work at that process. In short, we all have mental health, and we all need to mindfully recover our mental health all the time, but mental illness requires a different kind of recovery.
Spoiler alert – my ankle was a simple sprain and I hobbled out on crutches and a prescription for, you guessed it, REST! In a few days it was right as rain. That is the last piece I want to touch on here. While rest is not the same thing as recovery, recovery takes rest. It takes time and relaxation – whatever that looks like for you. Sometimes staying off of it – metaphorically speaking, of course – is the best thing you can do for your mental health. Sometimes you need a crutch. So, take your weekends and vacation days to rest. Do something to take care of yourself. And watch your battery life go up.
Author: Jessica Ward-King
BSc, PhD, aka the StigmaCrusher, is a mental health advocate and keynote speaker with a rare blend of academic expertise and lived experience. Equipped with a doctorate in experimental psychology and firsthand knowledge of bipolar disorder, she’s both heavily educated and, as she likes to say, heavily medicated. Crazy smart, she’s been crushing mental health stigma since 2010.
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Older adults are more likely to suffer from social isolation and loneliness is increasingly being recognized as being bad for our health. The good news is that mattering and belonging can flip the script. Our series explores these and other related concepts.
When Pat Flude was experiencing painful side effects during her breast cancer treatment, a doctor from the pain clinic at Toronto’s Princess Margaret Hospital (PMH) gave her a “social prescription” for a mindfulness-based cognitive behavioural therapy class.
“I went every week for about three months,” says Flude, a 78-year-old retired teacher and cancer survivor. “The psychiatrist who led the program, Dr. Mary Elliott, was marvelous. It was so excellent; I even did a follow-up class in loving kindness.”
Since everyone in the class was also being treated for cancer, there was a real sense of community. Flude says she looked forward to the reunions that took place at quarterly graduate sessions. “For me, at that time,” she recalls, “it was really life’s blood.”
Although not every hospital is as proactive as PMH at offering prescriptions for things other than drugs, the “social prescribing” movement is growing by leaps and bounds. The guiding principle is to address the social determinants of health – non-medical factors that influence health outcomes – that are often neglected in medical settings. To fill that gap, primary health care providers refer a patient to a senior resource coordinator who steps in to “prescribe” wellness opportunities (specifically chosen classes or outings based on interest) often for older adults who have higher rates of being at-risk for loneliness and/or social isolation.
From isolation to inclusion
“The big one is social connection,” says Connie Newman, executive director of the Manitoba Association of Senior Communities. “We’ve got some older adults who haven’t been out of their apartments for too long. With a social prescription, we can connect them to one of Manitoba’s many older adult groups.
“Some might be at the local legion; in other communities, it could be the local senor centre,” Newman explains. “Wherever it is, the clients sometimes need a little support to join.”
Connie Newman, executive director of the Manitoba Association of Senior Communities: Social prescribing can open the door to connecting older adults to others in their communities.
Although research associating social isolation and loneliness with negative health outcomes began, in earnest, a little more than 40 years ago, programs to prevent or reverse these conditions and foster a feeling of belonging are relatively new. Spurred, in part, by the pandemic, which raised awareness of negative mental health effects associated with isolation, “social health” (well-being as an outgrowth of social connection), has become a hot topic lately. Japan and the United Kingdom both have ministries devoted to addressing loneliness, which some consider an epidemic, especially among older adults.
Here in Canada, the Canadian Coalition for Seniors’ Mental Health has recently launched the world’s first clinical guidelines for addressing social isolation and loneliness. Since older adults experiencing isolation often see health and social service professionals, clinicians are key people for identifying at-risk patients, so it’s very important to get them on board.
“Although there’s been a huge amount of research in the area focused on associated health risks there has been relatively little written from the perspective of how to actually help people,” says Dr. David Conn, a geriatric psychiatrist who works at Baycrest Health Sciences and the University of Toronto.
The guidelines, which are making their way into healthcare and community settings, are designed to help clinicians screen for loneliness and isolation, assess the problem and its causes and make helpful recommendations. In some cases, a social prescription might transform the quality of life of a person experiencing isolation but, for those with chronic loneliness, recovering from those feelings is often much more complicated. Neuroscientists have even suggested that loneliness can re-shape the brain in ways that make social contact less rewarding, thereby making it harder—but not impossible—to “cure” loneliness. A meta-analysis of research found that a range of therapies including animal therapy, exercise, and cognitive behavioural therapy were associated with reduced feelings of loneliness in older adults.
The power of place in fostering connection
That’s a nugget of good news but, as we should all know at this point, prevention is, by far, the best intervention. Some researchers advocate for social prescriptions for people of all generations, as well as working to remove health equity barriers, so that we have a population that’s in good health as it moves into middle age. As Dr. Conn points out, problems with depression, hearing, vision, mobility, and chronic pain can impact our capacity for socializing and staying active.
Providing an environment for people to stay fit and connected to the community goes far beyond healthcare and even public health, since it involves reimagining a range of public spaces, some of which we take for granted. Over the past 20 or more years, we’ve heard a lot about the “third place”—spaces like barber shops, cafés, and shopping malls that are neither work nor home but can foster community and a sense of belonging. The next frontier may well be “fourth place”—streets, squares, bus stops—which, if well-designed, can help promote social health and cohesion. That can only work if they’re truly accessible, however.
“The design is often good in a privileged neighbourhood,” says Julie Karmann, PhD candidate at the University of Montreal’s School of Public Health. “But if you go into a more deprived neighbourhood, you can see that the street is no longer that accessible and not that pleasant for walking.”
Karmann’s work is based in the idea that the simple act of walking can help social health, of which connectedness is an important component. Even relatively well-designed fourth places, though, often miss the mark when it comes to being truly age-friendly.
“Basic improvements like more accessible and affordable transit, safer intersections, and well-maintained sidewalks are essential,” says Eddy Elmer, a Vancouver gerontologist and research consultant specializing in aging and mental health. “People don’t want to go outside if the streets are dark or feel unsafe, regardless of age, but this is especially true for older adults who worry about slipping, falling, or other hazards.”
Maintenance, regular snow and ice clearing, as well as accommodations for persons with disabilities should seem like a bare minimum, but austerity measures in various municipalities have often led to worsening conditions. While we wait for political change, social health programs such as prescriptions can help, especially the ones that move beyond the individual and involve the community.
More walks, more smiles
“One of my favourite programs is from the Netherlands, which has a whole strategy and campaign against loneliness,” says Conn. “One of the programs is an app that connects older people who don’t have a pet with a younger person who has a dog but doesn’t have enough time to walk the dog because they’re out working all day long. It has many benefits for all involved including the dogs!”
Burnaby B.C.’s “Say Hello” campaign is arguably even more effortless. Initiated in 2020 by local physicians worried about pandemic-induced social isolation and loneliness, the project encouraged folks to be a little friendlier to the people they passed on the street.
“It’s super simple, but yet requires a whole paradigm shift, because it has nothing to do with a physician or a clinic,” says Karmann. “Just implementing the norms of greeting in the neighbourhood or smiling to the person you meet in the street can make a huge difference with your sense of belonging.”
Karmann says it’s a tiny gesture that can have a big impact on the population, not just the individual.
“It’s just knowing the people around you,” she adds. “It can be as easy as asking, ‘How are you doing?’.
Author: Christine Sismondo is a Toronto writer who hopes to one day live with friends in a communal living project modelled after The Golden Girls. She’s not sure she’s met her Blanche yet, but hopes to soon, since someone’s got to keep things spicy. And pay the bills.
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In the summer of 2023, Vancouver Island resident Linda Fedun was feeling pretty lonely, even though social distancing measures had been lifted the year before.
“The pandemic started it, but it was when my back pain became serious that things got really bad for me,” says the 63-year-old retired daycare worker. “I couldn’t really go out. I’d be out for half an hour and then I’d have to go home in tears.
“Social isolation is hard,” she adds. “Especially since it’s just me and my two cats.”
Many older adults in Canada can relate. It’s hard to pin down exact numbers, but Statistics Canada has estimated about 30 percent of older adults are at risk of experiencing social isolation and, in 2019 and 2020, almost one in five reported feeling loneliness.
Social isolation is defined as having both a low quantity and quality of contact with others. It’s marked by an absence of mutually rewarding relationships and can lead to poor health, loneliness, emotional distress, and other negative health outcomes.
For some, that feeling is chronic. For Fedun, things improved after the doctors figured out a treatment plan for her osteoarthritis last October and she could finally reconnect with her community and get back to things like taking regular walks. One of these took her by an encampment she hadn’t even realized existed, even though it was only a few blocks from her home. There, she recognized an old acquaintance who told her she and her partner had been unhoused for months.
“I went right home and started looking for what I could spare,” says Fedun. “And then I realized it’s more than that. They needed much, much more than that.”
Fedun started asking for help from neighbours through her Nextdoor app, a social networking site that helps people connect with local folks for potlucks, buy-and-sell, and other exchanges. Members of her community responded enthusiastically with food, warm clothing, and propane for a Coleman stove. She organized pick-ups and drop-offs and connected with an advocate for the unhoused who gave her a “crash course” on housing insecurity. The pair launched a Go Fund Me campaign to help their unhoused friends get an apartment.
Social isolation is a thing of the past for Fedun and, perhaps unsurprisingly, so is loneliness. “I have a sense of purpose now,” she says.
For many, though, the answer isn’t as simple as getting back out, largely because social isolation and loneliness are two different things.
Social isolation and loneliness—what’s the difference?
“Social isolation is objective, such as the number of people in your life and how often you interact with them,” says Eddy Elmer, a Vancouver gerontologist and research consultant specializing in aging and mental health. “Loneliness, on the other hand, is more subjective. It’s the feeling that there’s a mismatch between the relationships you want and those you actually have, whether in terms of quantity or, especially, quality.
“One person can be fairly isolated but not feel lonely, whereas another can have a large social network, but feel quite lonely,” Elmer continues. “It all depends on their unique social needs and expectations.”
Since they’re two distinct problems, they require completely different approaches. And, generally speaking, it’s easier to reverse problems associated with social isolation than it is to help people overcome chronic feelings of loneliness.
“It’s probably normal to have some degree of loneliness from time to time,” says Dr. David Conn, a geriatric psychiatrist who works at Baycrest Health Sciences and the University of Toronto. “But for people who feel intense, chronic loneliness, the origins of that are often rooted in early life relationships and how they feel about people in general.”
Despite not being interchangeable, both social isolation and loneliness are associated with a range of negative health outcomes. In older adults, social isolation is correlated with frailty, cognitive decline, and depression, as well as increased chances of a premature death.
“The key word here is ‘correlated’ because establishing causation is not straightforward,” says Elmer. “But studies find that both loneliness and social isolation are associated with increased inflammation, weakened immune function, hypertension, cardiovascular disease, diabetes, and poorer sleep quality.”
That last symptom may be an important piece of the puzzle. According to the evolutionary theory of loneliness, poor sleep is part of a “hyper-vigilant” state triggered by social disconnection. In a nutshell, for early humans who lived in smaller hunter-gatherer tribes and had to work together closely for survival, being alone was dangerous. Loneliness is an unpleasant emotional response that might be an adaptive mechanism, since the pain of being alone can serve as a biological signal to restore social relationships and get back to safety.
Vancouver gerontologist Eddy Elmer: You can be isolated and not lonely; you can also have a wide social circle and still feel lonely. It all depends on one’s needs and expectations.
Mattering is good for the grey matter
Even though way fewer sabre-toothed predators are prowling around these days, being a member of a clan is still the safer and healthier choice for most people. A recent study from Carleton University found that higher belongingness is connected to better health outcomes for people of all ages—but particularly for older adults.
“What we found was that older individuals who felt they belonged to their neighbourhood were about six or seven percent healthier than people who didn’t,” says Mehdi Ammi, Associate Professor at Carleton’s School of Public Policy and Administration. “Belonging reduced most chronic conditions and was preventative in arthritis and anything connected to chronic stress.”
Social psychology proposes that high levels of belonging can help chronic stress, so it may offer a protective benefit to folks who feel like they have a place at the table. Though some positive psychologists say that while belonging is a good start, an even stronger protective benefit can be seen in people who feel like they matter.
“Belonging is fitting in and having a place,” explains Gordon Flett, Honorary President of the Canadian Psychological Association 2024-2025 and former York University Canada Research Chair. “Mattering is feeling a sense of significance and value within that place. For example, a person could be part of a community, but still feel they’re not being taken seriously.”
The correlation between loneliness and the feeling of not mattering is very robust, he says. “The research about loneliness and the elderly show that there are just too many people who don’t have any meaningful engagement of a prolonged nature with the people who matter to them,” Flett continues. “And they’re left to feel lonely. And when people feel alone and insignificant at the same time, we call that ‘double jeopardy’.”
Conversely, mattering is thought to provide a buffer of sorts that protects individuals from significant stress, whether it’s caused by loneliness, caregiving, loss of independence, and even financial issues.
“The bottom line is that knowing people value and care about you is very comforting,” says Flett. “And I think it also means that you’ll be more likely to ask people for help when you need it.”
It can be difficult for older adults to feel valued and have a sense of meaning, especially in North America, where the culture valorizes youth, fails to provide age-inclusive spaces or age-friendly cities, and views health as an individual responsibility as opposed to a collective one. All these things are factors in widespread loneliness amongst Canada’s older adult population.
While we wait for societal changes, many older adults who have the ability are finding ways of aging in community and generating mattering experiences for themselves. For some, that might be grandparenting. For others, it might be volunteering to help other older adults.
“My wife’s uncle Derek, who almost made it to 100 and lived by himself his whole life in Fort Qu’Appelle, Saskatchewan, was well-known for his volunteer work,” Flett offers. “He delivered Meals on Wheels to people younger than him into his 90s because he was in great shape.
“I once asked him if he ever felt lonely and he cut me off. He said, ‘Not for a second. Because I know there’s people out there who care. And I can get to them, and they can get to me’.”
Further reading: Home Alone: Aging without support is becoming more prevalent for older people in Canada. How can we stem the tide?
Author: Christine Sismondo is a Toronto writer who hopes to one day live with friends in a communal living project modelled after The Golden Girls. Since it was her idea, she gets to be Dorothy.
This blog post presents a review of the current literature on Indigenous Perinatal Mental Health, exploring key themes, gaps, and emerging insights. Drawing on both academic sources and community-informed perspectives, this review is enriched by the voices of leaders from Indigenous-led associations who offer vital context, critique, and cultural grounding. Their commentary not only deepens our understanding of the complex interplay between perinatal mental health and Indigenous experiences but also affirms the importance of Indigenous leadership in shaping responsive, culturally safe care.
The Gaps in Research: Why Aren’t We Talking About This?
As I began researching this topic, I was struck by how little information exists on Indigenous Perinatal Mental Health (PMH). The absence of data speaks volumes; this issue has been overlooked for far too long. A 2020 systematic review published in the Canadian Journal of Psychiatry by Sawayra Owais & colleagues found that Indigenous women are nearly twice as likely to experience postpartum depression as non-Indigenous women, with prevalence rates reaching 31%. Despite this, culturally safe care remains scarce, forcing Indigenous women to navigate their struggles alone – often in silence.
This silence is not a choice but rather a symptom of a system that has long failed Indigenous mothers. PMH, essential to the well-being of both mother and child, remains riddled with barriers.
While many existing studies examine general barriers to maternal health care, very few explore the emotional toll these challenges create. A 2022 study by Zarish Jawad, Nikita Chugh, & Karina Daddar found that PMH services for Indigenous mothers are often inaccessible, underfunded, and culturally inappropriate, making it even harder for women to seek the support they need.
A Legacy of Mistrust
To understand why Indigenous mothers hesitate to seek PMH care, we must first acknowledge the deep-rooted mistrust in Canada’s health-care system. For generations, Indigenous families have been subjected to policies that severed the bond between parent and child, making it challenging to trust institutions meant to provide care. Health care settings have not historically been places of healing for Indigenous people.
Robin Smoker-Peters, Instructor of Indigenous Health at Western University, reinforces this reality: “These are not just events of the past. The last residential school in Canada closed in 1996, and forced sterilizations were still occurring up until a few years ago. This is not just history; it is still happening and continues impacting how Indigenous people engage with health care.”
Even today, Indigenous mothers fear that seeking PMH care may lead to child welfare involvement. According to Census 2021, Indigenous children make up 53.8% of those in foster care despite representing only 7.7% of Canada’s entire child population. Families are torn apart due to systemic biases rather than genuine concerns about parental capability.
A deeply harmful policy that reinforced this fear was the Birth Alert system, which flagged Indigenous mothers as child welfare concerns, often based solely on their connection to residential school survivors. As Smoker-Peters explains, it operated on the assumption that Indigenous mothers were unfit, leading to newborns being taken from their mothers without cause. While now banned in B.C., many Indigenous women still hesitate to seek PMH support.
The Disconnect
For Indigenous mothers, Western PMH frameworks lack the culturally grounded support they may need. A 2023 study by Christina DeRoche & colleagues found gaps in culturally appropriate care for Indigenous parents after surveying perinatal professionals about barriers diverse populations face in accessing PMH care.
One provider shared, “Do not forget about Indigenous PMH, as they are referred to us for obstetrical care, but we are unsure of what to do after [receiving] a diagnosis,” reflecting a system with no clear, culturally relevant care paths. Another noted the “lack of Indigenous-specific services for perinatal mood issues.” Even providers recognize their limited ability to offer culturally sensitive care, yet these gaps will persist without policy-level change.
Addressing Indigenous PMH means more than acknowledging disparities; it requires action that centers on Indigenous voices, traditional healing, and culturally safe care. Smoker-Peters stresses this point: “There is an overfocus on intergenerational trauma and not enough attention on how the system itself continues to be racist and harmful. Indigenous mothers should not be viewed through a deficit lens. They have immense strength and resilience, and the system needs to recognize that.”
Indigenous-Led Solutions: A Path Forward
Despite these challenges, Indigenous midwives and community-driven health programs are working to bridge these gaps. The National Indigenous Council of Midwives (NICM) has advocated for Indigenous-led maternal care that respects traditional knowledge while integrating modern medicine.
Claire Dion-Fletcher, past co-chair of NICM, emphasizes the systemic issues that Indigenous women face in health-care settings during a Canadian Senate meeting in March 2024: “I understand that doctors and all healthcare providers have expert knowledge in health and medicine… but we also have to recognize that Indigenous people and Indigenous women have expertise in their bodies. When we continuously, as health-care providers, say what we think is best for Indigenous people, we are taking away their ability to say what is best for them and to make decisions about themselves.”
Indigenous midwives are essential in ensuring reproductive care upholds autonomy and informed consent. NCIM Executive Director Ellen Blais states, “We are prevention by applying the principles of free, prior, and informed consent, continuity of care, culturally rooted care, and patient advocacy.”
This advocacy highlights the vital role Indigenous midwives play not only in providing care but also in championing the rights and dignity of Indigenous women.
Incorporating Indigenous midwifery into perinatal care models is more than a health-care improvement; it’s a step toward reconciliation. By supporting Indigenous-led maternal care, we can create a system where Indigenous mothers feel safe, respected, and empowered throughout their perinatal journey.
An important initiative is the Bringing Birth Home project, which aims to restore Indigenous midwifery and support community-based births, reducing the need for long-distance travel. As highlighted in the Association of Ontario Midwives’ article “Bringing Birth Home: Restoring Indigenous midwifery,” historically, every Indigenous community had a midwife providing comprehensive care, but colonial policies disrupted these traditions. This initiative works to restore midwifery practices and keep birth rooted in the community.
What Needs to Change?
For starters, Indigenous-led PMH programs need more funding and support from our government. Organizations are already doing this work but need the resources to expand their outreach.
Another big piece of the puzzle is representation. Indigenous women deserve to see themselves reflected in their care providers, yet there is a shortage of Indigenous health-care professionals. Dion-Fletcher explains that an Indigenous response “would be rooted in relationships and focused on prevention, and [she] thinks one of the key ways that we can do this is through Indigenous health-care providers, Indigenous midwives, Indigenous doctors, nurses, and patient navigators who are there to promote the autonomy.” Encouraging Indigenous students to enter these fields, providing scholarships, and ensuring that non-Indigenous health-care providers receive cultural safety training are all steps in the right direction.
It’s Time to Listen
For too long, Indigenous mothers have been left out of conversations that shape their PMH care. The barriers they face go beyond access – they’re rooted in history, trust, and the right to health care that respects who they are.
But the solutions already exist. Indigenous midwives and community health workers are offering impactful, culturally rooted support. If we genuinely want to see better maternal health outcomes for Indigenous families, policy makers should better engage and include Indigenous voices – by funding Indigenous-led programs, increasing representation, and ensuring that seeking help is seen as a right, not a risk.
As we push for change, we must also recognize the histories and rights of Indigenous peoples, whose voices have too often been ignored. Ultimately, this isn’t just about policy—it’s about people.
I acknowledge that the land on which this article was written and researched is the unceded and unsurrendered territory of the Algonquin Anishinaabe Nation.
Author: Mariam Hasan
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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.
In Monica McAlduff, the First Nations Health Authority (FNHA) has found a leader whose personal journey mirrors the transformation they seek to create. The MHCC sat down to learn more about the new CEO, her vision for the organization’s next chapter, and her commitment to walking in a good way.
Home, at last
After nearly three decades serving within a system that gladly received her care, but never made her feel entirely welcome, Monica McAlduff is home at last.
As the incoming CEO of the First Nations Health Authority (FNHA), Monica’s quiet conviction shines through the screen during our virtual meeting.
“Culturally safe, patient-centered care is the beating heart of our organization’s mission,” she explains, her words carrying the weight of both professional expertise and lived experience.
For Monica, assuming leadership of the FNHA represents a milestone in a career carved with careful intentionality. Beginning with clinical psychiatric nursing, then pursuing advanced degrees and leadership, Monica understands intrinsically that First Nations patients can’t get well in an unhealthy system.
“As nurses, we may not naturally gravitate to leadership, because our instinct is to give care,” says Monica. Yet, it’s this person-first worldview that is often lacking at the highest levels of conventional health-care administration.
“As a nurse working with people living with substance use or mental health challenges, day- in, day-out, I saw how supporting someone in their wellness journey required treating the whole person – and understanding the context of their environment and relationships,” explains Monica.
It’s this philosophy, together with her unwavering belief in Indigenous resiliency, that she now brings to the challenges that lie ahead.
Rooted in care
Monica comes by her heart to serve honestly.
Her mother, a residential school survivor, worked as a nurses’ aide while instilling in Monica the values of hard work and integrity.
“My mother lives by the motto: if you’re going to do something, put your whole heart in it,” Monica says, her expression lighting up. “She never speaks a harsh word. When confronted with racism or hatred she rises above it. When I was growing up, she was determined that her past would not dictate her future, or the future of her family.”
As a second-generation residential school survivor, Monica understands intergenerational trauma from the inside out. She speaks candidly about still piecing together parts of her past that her grandparents felt best left buried until fairly recently.
This personal connection to colonization’s lasting harms shapes Monica’s approach to healing systems deeply scarred by historical trauma.
Monica McAlduff, CEO, FNHA
Walking between worlds
When I ask Monica about her early experiences as a psychiatric nurse, she becomes visibly emotional, wiping away tears from beneath her black-framed glasses. She describes seeing Indigenous patients being treated with disdain and disregard, and how she felt obliged to hold her own identity close, for fear of being discounted by her peers.
When I instinctively apologize for broaching this raw topic, she graciously responds: “In our culture, tears are healing. They aren’t something to hide.”
This duality – vulnerability alongside strength – defines her leadership approach.
“I worked in a system where I was forced to hide my own identity – something that, by rights, I felt deeply proud of,” she explains. “How could I provide authentic care while denying my authentic self?”
With racism and discrimination baked into the very bones of the healthcare system, healthcare workers who feel pressure to conceal or supress an essential part of their being can quickly find their identity eroding and their well of compassion running dry.
Seeking to resolve this contradiction would forge Monica’s life’s work.
That’s why today, she feels compelled to be as visible as possible, making the path easier for those coming behind.
“This role is more than a job for me,” Monica reflects.
It’s a way for her to honour her younger self. To smooth the path for others – regardless of what identity they may struggle to honour. And to rewrite the future.
Restoring faith in medicine’s highest calling: Do no harm
The ground-breaking cultural humility framework that FNHA has developed identifies and addresses inequities, creates cultural humility, respects knowledge holders, and walks alongside communities to address their needs.
The goal, says Monica eloquently, “is to plant a seed, and grow a meadow.”
And while she agrees there’s been collective progress, citing the United Nations Declaration on the Rights of Indigenous Peoples, the Truth and Reconciliation Commission’s 94 Calls to Action, and British Columbia’s provincial In Plain Sight Report, her focus is squarely on the work ahead.
“People are still dying in health-care settings because of bias and racism. No matter how stretched the system may be, and how hard people may be working within it, this is patently unacceptable.”
That said, Monica cautions that any standard – no matter how thoughtfully designed – is only as effective as its implementation.
“Checkbox exercises aren’t going to result in meaningful change,” she says. The FNHA itself underwent an assessment against the framework, because bias can seep through even the most stalwart bulwarks.
“What will signal progress is patient evaluation. When you hear from an Indigenous person that they felt seen and cared for, that’s the true litmus test.”
She says that will happen only when patients’ wisdom and expertise in their own healing journey are respected and supported, and the system is culturally safe for those providing care.
Ultimately, Monica believes that system-wide implementation of the framework will benefit everyone who walks through the doors, regardless of their background. But the imbalance faced by First Nations individuals seeking care is always at the fore of FNHA’s work.
A holistic approach
The First Nations Health Council – a provincial-level advocacy organization that represents, and is accountable to, First Nations in British Columbia, has developed a ten-year strategy addressing the social determinants of health. It recognizes that the “system” itself is a constellation of schools, water, land, healthcare, housing, family, community and culture.
“As the organization tasked with leading the implementation of this strategy, we at FNHA understand that health can’t be addressed in isolation,” she explains. “The same colonial systems that disrupted our health practices also disrupted our relationships with land, water, language, and each other.”
And when it comes to embedding First Nations ways of knowing and respecting cultural tradition across health-care systems more generally, Monica says the time for excuse-making is over.
“In our culture, it’s relational. Everything is based on relationships,” she explains. “Start with the basics. What territory are you on? What communities are nearby? Who am I? Who are you? How can we co-create together?”
Wholehearted leadership
As our time ends, Monica returns to her mother’s wisdom: “Lead with heart, or leave it to someone else.” For her, leading the FNHA represents the culmination of a deeply personal journey and an opportunity to transform health-care for the next seven generations.
“We can build a system where no Indigenous person has to hide who they are to receive or provide care. That’s the future I’m walking toward – one where cultural safety isn’t an afterthought, but the foundation.”
Monica stands firmly in two worlds, fluent in both the institutional language of health-care systems and the traditional approaches to wellness that have sustained Indigenous communities for millennia.
In closing, Monica returns to the light that guides her work.
“For us, for First Nations, culture is medicine. They are one and the same.”
Author: Suzanne Westover
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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.
