“I am we, we are a year, we year, we are rest, we rest.” 

In winter 2024, Sop had a severe relapse of myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), leaving them housebound in South East London.

That summer, in the days leading up to a friend’s birthday celebration, the artist rested carefully so they would be able to attend. The night before, they started taking what was touted as a “magic” pill for insomnia. They didn’t sleep at all and had to miss the party. But in a sleep-deprived haze, they wrote, as they described in a recent interview [1], “a solidarity rant, a kind of letter to other disabled people stuck indoors.” 

When Shape Arts, a UK disability arts organization, approached Sop with a commission, they decided to adapt the essay into a script for We Year, a mixed-media love letter to others living with energy-limiting conditions. The short film premieres at RestFest—a film festival and virtual space by and for the disability community—as part of a program co-organized by The Remote Body, Resting Up Collective, and Ort Gallery. 

With a poetic voiceover and ethereal soundscape, We Year immerses viewers in a chronic illness flare during a sweltering summer, blending decades-old archival footage from when Sop was well enough to move outside freely with recent phone footage shot at home. Shifting between past and present and between interior and exterior, the experience is at once isolating and unifying, claustrophobic and liberating. 

We Year also features 16mm direct animation, a technique that involves drawing and scratching moving images directly onto film stock rather than recording with a camera. Here, Sop used ink to overlay the orange stress bars from their Garmin watch across the entire film—a constant representation of their body that acts as a symbolic barrier between them and the audience. 

The following interview has been edited for length and clarity. 

When did you begin to think of yourself as an artist? 

I always wanted to be an artist. Even as a kid, when I was asked, “What do you want to be?”, I was like, “An artist!” I honestly have never thought about doing anything else. I grew up in the deep countryside, and there wasn’t much access to contemporary culture, although I was obsessed with music and music magazines. There was this teen music magazine called Smash Hits that I loved, and I made collages and scrapbooks of pop stars. When I was 13, I went to a big retrospective of the massive British artist David Hockney, who just died, and it was the first time that I’d seen contemporary art. It blew my mind, and that’s the first time I remember thinking, “Oh, this is something serious that I want to do.” 

What questions or themes does your art usually explore? 

I find it hard to make work that isn’t about my life and the things that I’m dealing with. What I do always ends up being ultra-personal. That’s not something that a lot of people do, necessarily. The act of living as a chronically ill person means that you have to live in the world in a very different way from people who are not chronically ill. Chronic illness is a fertile area for ideas. You’re living the life and thinking about the life at the same time. If you’re an artist or someone who thinks about things in conceptual ways, you can’t help but try and interpret your life into art-making, projects, or ideas. Everything’s interesting. It’s like living life wonky.

As a chronically ill person,  I can’t do a 9 to 5. I can’t necessarily keep to plans, and I can’t always do basic things, like sometimes even look after myself in a normal  way. The agency that I have is to interrogate what this life means and the challenges that it poses and what is interesting about that. What can I say that’s beyond how I would perhaps describe being sick to a stranger? Like, what’s within that? All of the work that I make—even if it looks not about that—is going to be about that.   

And then the other part of it is that I grew up in the field and was a tomboy covered in mud. My understanding of the world was through nature, and now I’m in a flat without a garden. I can see some trees in the park just over there, but quite often, I’m not well enough to go and hang out in the park. I am pretty obsessed with nature and the fact that I can’t get to it. I can’t really have that life currently.  

In your bio, you describe yourself as “a torn and crooked leaf, a root embedded in the dirt, a shoot reaching to the sky.” Would you please elaborate on what this means? 

When I wrote that bio, I was making work about my body being the same as the microbiome in the soil. “A torn and crooked leaf” is being chronically ill. “A root embedded in the dirt” is really what it sounds like, within the context of that specific work. And the “shoot reaching to the sky”—my work deals with pretty hefty emotions, but there’s always hope. My life is not a miserable life; it is hopeful, and I do believe there’s something so crucial in being chronically ill that you absolutely have to keep hope alive. It takes a lot of work to do that and to get there. It’s not easy, but it’s super important. If you have this restricted life, you absolutely have to shoot for the sky. Because time just goes on.  

What does working in crip time [2] look like for you? What are your long-term goals as an artist? 

If you’re truly working in crip time, it’s fairly impossible to have long-term goals. You haven’t really got a choice when you work. You can do your very best to carve out time or space. Currently, I have about a couple of hours in the early morning when I can manage to do something. My afternoons and evenings—I simply can’t make work then. If you have such a limited time to make work, the amount of work you make is going to be low. It will have to meet your capacity, and that doesn’t fit well with current art market production timelines or expectations. Sometimes, you can’t make something for a year because the thing that you should be working on—and the thing that is your work—is your health. That’s your full-time job.  

I deeply believe that making in crip time actually is truthful to the world. We would probably all be better off if we did. Really, it means making work to your capacity, and that can mean a lot of things. You don’t need to be ill to make to your capacity. 

It’s a more authentic timeline of meeting yourself where you’re at, rather than forcing yourself to meet arbitrary or toxic timelines. 

You haven’t chosen to have chronic illness—you’re forced into doing that. And I don’t think that’s a bad thing necessarily. Asking what would I like to do for my long-term goals—I find it very hard to answer because, first of all, I live, like, day to day and, second, when I think about what my long-term goals would be, it’s from the perspective of someone without a disability because I currently cannot see how I would be able to do more than what I’m doing unless I had an enormous amount of more support. 

How did you decide which media to work with for this project? 

Films and writing have always been the two mediums I mostly turn to, and actually they’re the most accessible things for me to do now, being housebound. When I was asked to make the film, I just didn’t have it at all in my means to film new work or leave the house, so I had to kind of figure out how to make a new work out of what I had, which was this personal essay I wrote about being stuck inside in the summer. I made the film throughout another summer of being stuck inside. A lot of chronically ill people turn their camera or phone or whatever onto their surroundings, so I had bits and bobs that I filmed. When I started making films, I would just film tons of different stuff. I had my little Hi8 video camera around the whole time, so I had lots of little clips that I hadn’t used, and I didn’t actually think that I was ever going to use them for anything. But that obviously wasn’t enough, and I didn’t really want to make a film which was just a film inside my house—there’s plenty of films like that. I had a whole bunch of old footage from the 90s. I digitized all of these tapes a few years ago, and they looked so great. A lot of that stuff was filmed out of the house, and then there were funny effects that I filmed which made it into the films. There’s a lot of blobs of color, which are actually motorway lights and ended up being this really nice kind of texture, which floated over and broke up some of the images.  

Hi8 and MiniDVs are the two cameras I was using in the past, so I have footage from both of those. And then there was 16mm direct animation. Each section of the film has a different animation running over it, but the animation is quite transparent, so it’s always there. It’s textural and has multiple meanings. And then I commissioned my friend to make the soundtrack. 

Would you elaborate on the meaning of the title of the film? 

The thing that’s turned me on most about this film is the fact that I can try and get “to year” and “yearing” adopted as a new way of describing spending all this time being sick. I think the word “year” is long enough for people to imagine, “Whoa, you are sick for a whole year. That’s a really long, unbearable time.” But then you make it into “yearing,” and then it could be even less than a year, but it’s probably closer to a year or multiple years. Then I was interested in what would happen if the years were then broken up with periods of being well, with relapses included as well.  

I find it really tiresome to have to explain the last five years of my life. So to not have to say, “Well, I was sick for a couple of years, housebound and bedbound, and then I got well again, and then I had a relapse”—it’s just like, “I was yearing.” I would love for it to become part of the lexicon of chronic illness.  

What does it mean to have “We Year” screened at RestFest? 

There’s this informal network of crip friends who work with each other. Not everyone works together, but we all know each other and there’s really close friendships within this group. They’re all small, crip-led organizations that have been made pretty much for the same purpose, which is remote events, screenings, and workshops. I was just really keen to connect and uplift all of these organizations. We created this program together, and I’m really proud of it. It’s been a lot of work, but it’s really nice making things with your friends. The access intimacy side of it all is real. Creating or programming with your friends is a very accessible way of making because we all understand each other and our capacities. I’ve said capacities a million times. 

You need to coin a new term for that as well. 

Okay, I’ll get on that for next time. 

We Year, through July 12 (if you start watching on June 28); RestFest Film Festival. “I am we, we are a year, we year, we are rest, we rest.” 

[1] “Interview with artist-filmmaker Sop + a Special Screening of their New Film.” RestFest, 2026,
https://restfest.substack.com/p/interview-with-artist-filmmaker-sop. 
[2] In her 2013 book Feminist, Queer, Crip, disability scholar Alison Kafer writes, “Rather than bend disabled bodies and minds to meet the clock, crip time bends the clock to meet disabled bodies and minds.” 

In the throes of the early AIDS crisis, people began stitching panels to remember their loved ones. The panels were joined in quilts, and the quilts were joined with each other until they became bigger than a tennis court, bigger than a football field. So unwieldy it became, the giant quilt had to be broken into pieces in order to be manipulated. Chunks would tour on display. It now has a virtual existence too and is curated by the National AIDS Memorial.

In 1989, Robert Epstein and Jeffrey Friedman made Common Threads, a 79-minute documentary, narrated by Dustin Hoffman. Based on the AIDS Memorial Quilt, their film traced the stories of five people who had died through the words of their grief-stricken friends and family. The survivors describe the solace that they had derived from quilting memorial panels for their loved ones. They also refer to milestones in the disease history: the president who would not utter the word; the movie star who acknowledged his own disease only after 15,000 had already died. The five divergent tales serve to emphasize the awesome scope of the tragedy: each panel and each name must recall an equally unique and cherished life cut short. In their final scene, the AIDS quilt lies on the Mall in Washington as names of hundreds of loved ones are read by grieving families and friends.

As the drone-less but steady camera slowly pulls back high above the patches of color in the evening light, I was reminded of the famous, expanding scene midway through, Gone with the Wind, as Scarlet O’Hara picks her way through the waste of Civil War wounded and dead. Common Threads is equally political, and it too is a love story. It won the 1989 Academy Award for Best Feature Documentary. I cannot help but imagine that the quilt and the film helped to generate the protections against discrimination of people living with HIV/AIDS provided by the Americans with Disabilities Act, signed into law in 1990.

Stitchery, knitting, embroidery, macramé and crochet have long been significant components of occupational and art therapy for mental and physical health (Leone 2021; Youngson 2019). But they have been marshalled into numerous anti-war, anti-discrimination, pro-environment causes with remarkable aplomb, talent, and humor. Remember the pink Pussyhats from the Women’s March in 2017? Patterns for them still abound on the web. The possibly antediluvian origins of crafting protest are featured in history and fiction: recall Charles Dickens’s knitters at the foot of the guillotine (Tale of Two Cities, 1859); or Margaret Atwood’s Zillah who makes art from dryer fluff, calling it “naive surrealism with a twist of feminist lemon” (Cat’s Eye, 1988); or even Peggy Erhart’s more frivolous parking-meter protest in small-town America (A Dark and Stormy Knit, 2024).

Self-described “craft nerd,” Betsy Greer coined the word “craftivism” in 2003. She wrote Knitting for Good (Roost Books, 2008) and edited an anthology that goes well beyond knitting to other techniques and contexts (Craftivism, Arsenal Pulp Press, 2014). Scholars have noticed (e.g., Moreshead and Salter, 2023; Vachhani et al, 2025). The diffuse movement has even found critics who challenge its “white, feminist appropriation of graffiti,” and seek to empower it to “evolve and become a more intersectional” practice (Close, 2018).

References 
Close, Samantha. Knitting activism, knitting gender, knitting race. International Journal of Communication 12 (2018): 23-23. 
Leone, Lauren. Craft in Art Therapy. Routledge, New York and London, 2021 
Moreshead, Abigail, and Anastasia Salter. Knitting the in-visible: data-driven craftivism as feminist resistance. Journal of Gender Studies 32.8 (2023), 875–886.
Vachhani, Sheena J., Emma Bell, and Alexandra Bristow. The Affective Micropolitics of Craftivism: Organizing social change through the minor gesture. Organization Studies 46.4 (2025): 525-547. 
Youngson, Bel. Craftivism for occupational therapists: finding our political voice. British Journal of Occupational Therapy 82.6 (2019): 383-385. 

Web image by Medhum.org

After eighteen years of clinical practice, I think I’ve looked after somewhere between four and five thousand patients in total. Some patients I meet only a handful of times. Others I know like extended family. There are all types of patients: pleasant ones, well-behaved ones, as well as difficult ones that try my patience and of course, some that I’d rather forget.

Of course, most of my patients are Chinese immigrants and immigrating is a difficult business, not something to be undertaken by the faint of heart. New home. Often a new language. Usually a whole new culture. The immigrant experience means uprooting a person or a family from all that they are comfortable with and placing them in a strange and unfamiliar setting.

If being an immigrant is hard, then being an immigrant as a senior citizen is even harder. Try learning English for the first time when you’re in your sixties and seventies. Try going to the bank or dealing with a leaky faucet when you are a stranger in a foreign land. And yet, I’ve seen countless examples over the years of Chinese seniors starting over in Canada somewhere in their sixth or seventh decades. I often wonder. What is it that makes them want to start over yet again in their life? Is it simply that they want to be closer to their children and grandchildren who’ve come to Canada? Is there nobody left back in their home country? Do they really know what they are in for? Can anyone really be prepared for it?

In my own family, I’ve seen this process of elderly immigrants play out firsthand. Both of my grandmothers spent portions of their later years living with my parents in Toronto, with varying degrees of success. Through them, I witnessed just how difficult it could be to be an elderly Chinese immigrant in Toronto, which is probably, with its enormous Chinese population, already one of the most Chinese-friendly cities in the world outside of Asia. 

In Taipei, my grandmothers could walk outside in the mornings and bring back fresh produce and noodles from the market down the street in their respective neighborhoods. Never mind that the produce in the Food City and Miracle Food Mart of my childhood was nowhere near as a fresh or tasty as the food culled on the subtropical island of Taiwan: in Toronto, our family lived in the suburbs of Scarborough, and later North York, so my grandmothers could only visit a store if my father was free on the weekends to drive them.

Of course, my grandmothers couldn’t read or speak much English. In the era before cellular phones and Google maps, my parents taught them to navigate the Toronto subway system by memorizing the pattern of the coloured tiles at the individual subway stations, back when the city made a point of individualizing each station’s appearance. Dundas Station meant yellow coloured tiles. This was important because this way my grandmother knew which spot to get off if she wanted to find Chinatown.

My maternal grandmother abhorred Canada. Her complaints were plentiful: the produce didn’t taste fresh, the winter weather was too cold, it was too difficult to go places without a car and the language barrier was insurmountable. Ultimately, nothing about life here was as easy or as convenient for her as life in Taipei. At some point, she actually learned enough English to pass her Canadian citizenship exam. But years later, she defiantly informed me that she had returned all that knowledge back to her teachers. She had forgotten it all.

My paternal grandmother didn’t voice her complaints about Canada as much. Whether it was because she was more content, or simply because she tended to keep more to herself, I’m not sure what she ultimately thought about being a Chinese immigrant. But watching from afar as she spent the long months from spring to fall in our house (she always returned to Taiwan before it got too cold), living with my mom while my father was mostly out of the house, I couldn’t help but surmise that things weren’t really that easy. She didn’t learn much English, and save for her morning walk around the neighbourhood, she rarely ventured outside the house, preferring instead to spend most of her days watching satellite television from Taiwan. Living with grandchildren you don’t know very well, a son who is usually at work, and making nice with your daughter-in-law on a regular basis; this was another form of the Chinese Canadian immigrant experience.

This phenomenon, that of the frustrated elderly immigrant, is one that I’ve seen countless times in my medical practice. Flummoxed by a language they don’t understand, struggling to live under the roof of a son or daughter-in-law that they aren’t completely in sync with, and often tasked with the thankless job of babysitting little grandchildren for no pay, the immigrant elderly experience is fraught with trials and tribulations. And that is before real crises hit the family: a car accident, or a health situation, or worse. Crises are difficult enough when you are surrounded by your social safety net of familiar family and friends. But now, imagine being in an unfamiliar country when life unloads a crisis as it is wont to do. The examples are endless, but the end result is the same. Frustration, resentment, and ultimately regret. Why did we ever bother to come here?

Over the years, I’ve seen versions of it all. Disinterested adult children chauffeuring their elderly parents to doctor appointments, and those children then falling asleep in the chairs while their parents are describing their symptoms next to them. Other times, I’ve seen seniors get chastised verbally by their children when they try to ask me one question too many. I’ve treated elderly patients who got into physical altercations with their son-in-laws. And it goes both ways too: I’ve seen adult children come to me to request Prozac knowing that their mother-in-law will be arriving a month from now.

When I sat down to write this piece about elderly immigrants, I thought about which of my patients I really wanted to know more about. One couple, the Chens, immediately leapt into my mind. I’ve changed their names here to protect their privacy. 

On the surface, there’s nothing special about them. They’re an elderly Chinese couple, living in Toronto while their children live elsewhere. They aren’t particularly well off, and they spend their retirement doing typical Chinese immigrant senior citizen things: attending doctor visits, taking classes at the community centre, and so forth.

But dig past the surface, and they are unique. They’ve been married for over sixty years, and they are quite possibly the happiest, most resilient seniors I know. When things happen to them that would certainly derail others, they laugh about it, avoid blaming others and then move on. I’ve seen it happen in my office many times.

A few years back, Mr. Chen was struck by a car while crossing the street as a pedestrian, injuring his shoulder. For many patients, this would be a cue for initiating legal proceedings and a demand for compensation, as well as an endless stream of doctor visits and requests for pain medications. How did Mr. Chen handle it? He laughed it off, dismissed my question about “who was at fault” in the accident and recovered within a few months while doing some exercises with a physiotherapist.

Not too long after that, Mrs. Chen was found to have a slowly growing brain tumour. For many patients, this would be cause for anxiety, angst and even hysteria. But for Mrs. Chen, it was just another fact of life. She decided that in her mid-eighties, she didn’t need to risk surgery, and she’d continue to live day by day, even though the neurosurgeons thought that a more aggressive approach might improve her mortality and her quality of life, especially if her vision were to decline further. But they didn’t take into account that she was already fine with her quality of life and didn’t see the need to potentially upend things with surgical complications. Now, three years later, she’s remained the same, happy, laughing patient, who always makes a point to end our visits with a “good bye“ or ”thank you very much,” spoken in English that she learned in her English as a Second Language class.

Actually, I’ll correct what I said earlier. The Chens aren’t just the happiest seniors I know. They are quite possibly the happiest, most well-balanced people I know. What is the secret sauce of their happiness? That’s what I set out to find out. And that’s what I explained to them when I brought them into my office to be interviewed a few weeks ago.

This is their story.

The first thing to point out is that neither Mr. nor Mrs. Chen’s life was easy. If we suspected that part of the magic sauce of resilience is the ability to live a peacefully blissful existence in a Garden of Eden type environment, the Chens’ lives, dating back to their childhood, shows that this is not the case.

Mr. Chen was born in a small town in the province of Shanxi, in Northern China in 1937. At that time, China was at war, trying to stave off Japanese occupation, and so he grew up in an environment where war and violence were everywhere. In fact, the Japanese began bombing his town of Qixian three days before he was born. As a child, he watched as soldiers of all the different warring sides-the Communist People’s Liberation Army, the Nationalist Kuomintang, and the Japanese—took turns filing through the town’s lone major road. His father was a businessman who later made a name for himself selling tea and often had to travel. Mr. Chen remembered that for some years, he would see his father only once a year. Fortunately, their family avoided major mishaps during the war years, but he remembers seeing body bags piled up by the side of the road. When World War II ended and the occupation by Japan ended, he recalled seeing people dancing in the streets.

Meanwhile, Mrs. Chen was born in 1938 in Tianjin in Northern China, one out of four children. Her father was a businessman, and her mother was a housewife. During the war years, her family moved regularly, living at different times in Sichuan, then Nanjing, and finally in Shanghai.

She had some recollection of planes flying overhead while she lived in Shanghai, and that her mother didn’t want her to attend school for fear of violence. But for the most part though, she didn’t see much of the violence of war firsthand.

Of course, the cycle of war in China didn’t end when the Japanese occupation ended. After the Japanese departed, the Chinese Civil War between the communists and the Kuomintang promptly resumed and only ended with the Communist Party victorious in 1949.

By liberation day of that year, Mr. Chen’s father had moved the family to Beijing. He was now a sixth grade student and heard the horns and sirens announcing the liberation of China. 

He would go on to continue his education in Beijing, and it was here that he witnessed the Chinese Cultural Revolution taking place. He was a university student in Beijing by the time the Cultural Revolution reached full swing, but he kept his nose out of politics and was not much directly affected. By now, there were no more actual classes in university. As engineering students, they spent time working in factories. He even recalled how during the Great Leap Forward, the students busied themselves with trying to figure out how to make iron into steel at Mao Zedong’s behest.

Meanwhile, Mrs. Chen had studied to become a mechanical engineer. She was one of only three women studying computers at her university, Tianda in 1960. She went on to study in an engineering school and then became a professor from 1961 until her retirement in 1998, at the age of 60.

Spread out over almost two decades, the Chinese Cultural Revolution under Mao Zedong marked the complete upending of all societal norms. Scholars were vilified. Universities were closed. Anyone with links to bourgeois thinking or a questionable family background was blacklisted. Countless people lost their lives and countless more lost their livelihoods.

Mr. and Mrs. Chen’s experience through the Cultural Revolution was notable mostly in that they managed to remain apolitical. Academics came under siege during the Mao era, and intellectuals were frequent targets of Mao’s reforms. They knew that it was better to avoid political conflict than to get into the heat of it.

When asked how he managed to survive this, he admits that he wasn’t that bothered by the political crises that surrounded them. He learned mostly to keep his mouth shut and keep out of trouble.

Mrs. Chen, meanwhile, became a scribe during meetings during the Cultural Revolution. In fact, she points out that her propensity for smiling and laughter showed up even here, as people identified her during these meetings as the “one who was always giggling.” On a more serious note, she remembers colleagues of hers who died during the years of infighting, but like her husband, she avoided most political issues herself.

Of course, all my elderly patients from China are survivors of the Cultural Revolution in one way, shape or form. And of course, there is a survivorship bias here. I’m talking to survivors, those who not only lived through it, but those who lived through China’s gradual rebuild, through Tiananmen Square, through Deng Xiaoping, and now live through to be able to tell their tales as Chinese Canadian immigrants.

Of course, while China was engulfed by these years of political upheaval, the Chens moved on with their personal lives. They had already met as university students but really got to know each other better in their final year of university. They ended up matching positions in Beijing together in 1962 and have been together ever since.

The Chens have two daughters, both of whom are now successful computer engineers with graduate degrees from prestigious North American universities. Their grandchildren are also studying to become engineers as well.

When her children were small, the Chens were busy as young academics. They were fortunate that Mrs. Chen’s hours weren’t long. She only taught two to three classes a week. Furthermore, the university had a kindergarten on site, and her mother came to help look after the grandchildren so that they could continue to work.

When asked about parenting tips, Mrs. Chen points out that they’ve been asked this very question many times by their friends over the years: “Your daughters are both so successful. However did you manage to inspire them?” 

Mrs. Chen tells me that she believes in parenting by example. She and her husband were both academics, so books were always plentiful in the house, and the parents could always be found reading. So, in time, the children saw them doing this and became intellectually curious themselves. “Don’t yell and berate,” she informs me. “That style of parenting doesn’t work anyways.”

What is unique about Mr. and Mrs. Chen’s immigration story is that while they have lived in Toronto for more than fifteen years, their two daughters have never lived here. This was a result of curious circumstances, but of particular relevance to our discussion.

When they first decided to come to North America to be closer to their children, one of their daughters was still studying in Manitoba and the other was on Long Island. Toronto, they reasoned, was roughly equidistant between Long Island and Winnipeg, and so they settled here.

A few years in though, their daughter in Manitoba married a Dutch husband, and before long, she had relocated to Holland to be closer to his family. This meant that the Chens would no longer be equidistant between the two daughters.

Still, rather than hinder their immigration experience, the fact that neither of their children are nearby seems to have strengthened their immigrant experience and actually gets to the root of how the Chens have thrived in Toronto. The Chens have never been reliant on their children. They made a point on arriving in Canada, to seek out the local LINC (Language Instruction for Newcomers to Canada) program, and began attending English classes on a regular basis. With no children to take them around, they’ve learned to make use of public transit. She tells me about how many of her fellow seniors at the community centre are reliant on their children to get around in Toronto. “They’re miserable,” she says. “They can’t do anything without their children.”

In my experience, many Chinese immigrants, even younger ones, pay only lip service to these offerings. With the influx of Chinese immigrants to Canada, it is possible to carry on a passable existence here and almost never speak English. But the passable existence has limits. You can rely on using exclusively Chinese-speaking service providers only so much, and there’s certainly a limit to how much patience your own children will have for acting as your translators.

The Chens moved into an apartment building near a bustling shopping centre, replete with a neighbouring Chinese grocery store and a large population of Chinese seniors. This is a far cry from other seniors like my own grandparents, who often end up living with their children in the suburbs, trapped on suburban streets where the nearest community centre or grocery store can’t easily be accessed except by cars which they cannot drive.

Through their English classes, the Chens became connected to various local Chinese community groups. Mrs. Chen proudly recalls that this was where she was introduced to me, having been informed that there was a local family physician who spoke Mandarin and was accepting new patients.

When asked what her overall sense of her immigrant journey is, Mrs. Chen tells me that she is most grateful for how she is treated by people in the Canadian service industries. A case in point: earlier in the week prior to our interview, she had received a notification of an error in her tax return from Revenue Canada. She took it upon herself to call Revenue Canada herself, and explained to me that in Canada, if she tells the agent on the other end of the line that her English isn’t very good, the person will invariably slow down and cheerfully take their time helping answer her questions. She says that this is a level of personal attention that simply doesn’t exist in China and is one of the things she is most grateful for here.

I think back to my own experiences dealing with the service industry, from my cellular provider to Revenue Canada. I’ve experienced many feelings when dealing with these people, but gratitude has never been near the top of the list.

These days, when the Chens visit their children in the US or in Holland, things are pleasant. Both of their daughters married foreigners. One of their son-in laws is Dutch and the other is American. They describe their son-in laws as both being extra polite, and extremely attentive to their daughter’s needs. But of course they would describe them this way. It only makes sense for such a happy couple to be able to get along just fine with their son-in-laws.

After sitting and talking to the Chens, I took away several ideas from their story. It seems that a stressful childhood environment does not preclude being happy and balanced as an adult. 

But the most remarkable trait of this amazing couple that I have learned is their willingness to adopt a growth mindset. I wonder who taught them this? Certainly, they grew up long before terms like growth and fixed mindsets became common parlance. I wonder if this comes from their background as educators. How else can I explain their willingness to come to Toronto, a country in a strange land where they had no existing family members? How else can I understand their enthusiasm for learning English at an age when many elderly are convinced that an old dog can no longer learn new tricks?

From this growth mindset, comes the steadfast determination to look after themselves and remain independent from their children. They know they can look after themselves, and their children know it too. In this day and age of complicated intra-family dynamics, when the best-selling psychology book on Amazon is titled Children of Emotionally Immature Parents, I realize the Chens have somehow figured all this out and they didn’t need a self-help book to do it.

We model ourselves, whether consciously or not on the people around us. When I was younger, I imagined that my life as a senior probably would mean living like my grandmothers: a lot of sitting around, imbibing television shows while grumbling about how nothing is quite as good as it was in the good old days. But then I think about the Chens, and it makes me realize that we’re never really too old to reinvent ourselves, or too old to move to a new country, or even too old to learn a new language. All is possible, as long as we remember to smile and laugh.

Web image by  Li Lin.

Additional Chapters from A Chinese City Doctor’s Notebook

When Your Body Isn’t Yours 

01.12.26 875

From Tigers to Otaku

09.16.25 1763

The Happiest Couple

07.28.25 1480

The Things We Don’t Talk About When We Talk About Dying 

05.13.25 2062

One Patient, Two Systems 

02.24.25 2755

Demon Copperhead is nothing if not a novel centered on social concerns. It tells the story of a child born to a drug addicted mother in an oxycontin-ravaged community in western Virginia. He is delivered inside an intact amniotic sac, an anomaly that foreshadows a life-long fixation to see the ocean, any ocean. His mother has abysmal taste in men and repeatedly chooses to live with men who abuse her and physically threaten Demon. When she dies of a drug overdose, Demon is placed in foster care and forced to work countless hours as a virtual slave under horrible circumstances, without any consideration for his safety, by the person who is supposedly responsible for his wellbeing. He runs away and has a miserable encounter on the road with a streetwalker who entraps him and steals the hard-earned money that he has secretly saved and stashed away. Against all expectation, Demon reconnects with his dead father’s family, and they place him in a much more stable and secure environment – the home of the venerated coach of the local high school football team.  

The coach takes a liking to Demon. He recognizes Demon’s hidden strengths and talents and encourages Demon to try out for the football team. Much to his surprise, Demon achieves star status as a tight end, no longer a faceless hillbilly from the back country of mobile homes. But true to the trajectory of the novel, Demon suffers a major injury to his knee. He refuses surgery and tries to tough it out. Pain medication is key to this strategy and, of course, this being Appalachia in the late 1990s, oxycontin is too easily prescribed by doctors and too accessible to patients. A painful decline into addiction and despair ensues. Many of Demon’s peers fall victim to the oxycontin plague. But unlike them, Demon is resilient. He is a talented artist, and from early childhood he would draw cartoon-like sketches to escape from his desultory life.  

With the help and support of an art teacher who takes him under her wing during high school, Demon creates a comic strip that dramatizes life in the backwoods of Virginia and that gains regional notoriety. As the novel nears the end, there is a dramatic passage in which Demon confronts his social nemesis on a mountain ridge during a windswept rainstorm. It evokes a climactic episode in Kingsolver’s earlier prize-winning book, The Poisonwood Bible, where the life of a key character is threatened by an attack of army ants in the middle of the night. Ultimately, Demon enters drug rehabilitation, perseveres through the rigors of withdrawal, and gets clean. Against all expectations, Demon finds love and redemption. The woman of his dreams has been there all along, but when it happens, you cannot help but smile as you watch the two lovers acknowledge their feelings for one another. 

The title of the novel is a dead giveaway of who inspired it and Kingsolver acknowledges her debt to Charles Dickens in the postscript. Like her Victorian predecessor, Kingsolver is writing to protest the neglect and abuse that people, but especially children, living in post-manufacturing America have been forced to endure at the end of the 20^th century and into the next. In her vision, the grim experiences of people like Demon and his family, whose lives are attached to the land, are profoundly different from city dwellers. After their land was stripped of its natural resources, the rural communities in states like Virginia and Tennessee were left to languish economically and fall victim to predatory pharmaceutical companies which promoted the use of drugs that the proprietors knew would increase dependence and addiction.  

There is a relentlessness to this story and Kingsolver’s voice in many respects echoes the Biblical prophets. For some readers, the book is almost too depressing. But I think that fails to give enough credit to her Dickensian style and outlook. The sequence of episodes in different locations and with a revolving cast of characters is reminiscent of the publication of Dickens’ novels in serial installments that can almost stand alone. The narrative pulsates with non-stop action and there is an optimism that Demon will always pull through. He is an engaging character, blessed with emotional reserves and intellectual gifts that enable him to overcome his baleful surroundings. In that sense, his story, like Dickens’ novels, may strike some as unrealistic. Perhaps that is the most effective way a writer can successfully enlist readers to rally to her social cause, by offering a vision of personal triumph over social and cultural adversity. 

Coming back to the question I asked at the outset, can a novel inspired by social protest survive its era and outlive the conditions that spurred the author to put pen to paper, or fingers to keyboard? Novels like David Copperfield and The Grapes of Wrath are affirmative answers. I predict that the artistry of Demon Copperhead will ensure that it will still be read long after the environmental damage incurred by the coal mining industry and the human devastation of the opioid epidemic recede into history. Demon’s voice is so alive, his character is so engaging, and his tale is so moving that I am confident that the book will be on bookshelves or in data storage tools in a hundred years. It may be necessary to add notes to explain the ins and outs of the coal mining industry and how oxycontin was approved and marketed to an unsuspecting population, but those will be details that will not obscure the deep humanity of the book.  

Oprah In Conversation with Barbara Kingsolver

DEMON COPPERHEAD 
Barbara Kingsolver 
Harper Collins Publishers, New York, 2022, 548pp 

Web photo by George Hiles 

The Remarkable Life of Ibelin is a 2024 documentary about the life of Mats Steen, a Norwegian man who died from complications of Duchenne Muscular Dystrophy. The movie explores how Mats, unbeknownst to the people around him, adopts a full online persona that allows him to experience the fullness of the human experience through a video game, experiences that were denied to him in the physical world because of his illness. 

I grew up during the nascent age of video games and home computers. While our parents looked at computers as tools that might help us in the future, as children, we looked at computers mostly as a source of fun. We crowded around arcade machines at convenience stores and arcades, throwing away quarters until our pockets emptied. We congregated at our friends’ houses after school and on weekends, befriending whoever was fortunate enough to have a console or a computer powerful enough to support the latest graphics. 

Now though, as a parent and physician, my nostalgic view of video games is tempered by a mixture of skepticism and fear when it comes to games and internet technology. To hear the skeptics discuss it, video games are one of the root causes of the obesity epidemic, and online games and social media are part of the teen mental health crisis. Schools bring in experts to teach parents the perils of children spending time online while pediatricians pound out guidelines that describe “healthy limits on screen time.”  

This month, on Apollo On Call, we sit down to talk about video games and how there is another side to this narrative. We look at the story of Ibelin and talk about how video games may add to our lives in ways that many of us have never considered. 

Thank you, Mats, for showing us a different way to think about the online world. 

Luki and Dave 

The Remarkable Life of Ibelin Trailer

Images of Mats Sheen and Ibelin from Mats’ Facebook page and Medieoperatørene / Euforia

Unni–Dr Unnikrishnan Pulikkal–was my classmate and dorm-mate during the medical course. He had a keen interest in the arts right from his student days during MBBS, our undergraduate medical course, and was a wonderful painter. He told me about his switch to photography, though he continued to paint and make sculptures and other artistic creations. And In addition to creating art, he has created venues to display art; Unni, who hails from Kodakara in Thrissur district of the southern Indian state of Kerala, has started two museums in his hometown, in close proximity to the town’s hospital.  

The Art Museum of Love is one of the few museums in the world devoted to representations of love in art. When I said I wanted to visit, Unni gave me precise directions about reaching the place; it is located at the Azhakam service road about a kilometer from Kodakara town. The early December afternoon was hot. The climate has become warmer over the last three decades; temperatures over 40 degrees Celsius are now common during the summer. Climate change has hit Kerala hard.  

The art museum is delightfully air conditioned. I interacted with the two ladies managing the reception desk who told me that before I went in, I had to take off my shoes. I liked the design of the museum. Plenty of planning and thought had gone into the layout and the display rooms. The rooms are small and provide you with an intimate experience; the lighting is superb and highlights the exhibits. There are also spaces to sit and relax. You can read and reflect. The display boards provide detailed information about the exhibits, which were tastefully designed.  

Various types of love are addressed. Most of us are very familiar with romantic love. The love of a family, love between siblings and love between parents and their children and love of an extended family and society are also explored. Spiritual love is common in the Indian tradition. I could see a few of Unni’s paintings and photographs on display. Other art forms were also included in the exhibit. There were river stones sculpted by nature and others carved by skilled human hands on display. The driftwood sculptures fascinated me; in Nepal, I had a good friend, Dr Awate, who was fond of collecting driftwood as he hiked the hills of western Nepal. He mentioned that with some tender loving care some of these can become works of art.  

Ancient India had a liberal approach to romance and love. Traditional paintings had strict rules and regulations. Within these boundaries you were free to explore your creativity. Depictions of the Hindu God Krishna were prominent in the museum. Different traditional art forms from South Asia depicting Lord Krishna were on display. Artists consecrated their work to the lord, and Lord Krishna has been depicted in art forms and styles of painting throughout India. The diversity of these art forms makes them an interesting area of study. Tanjore paintings from Tamil Nadu are renowned for their rich colours and extensive use of gold foil. These have more detailed and regal patterns. Madhubani paintings from North Bihar (the Mithila region) use earthy colours and are usually done in geometric patterns with bold outlines (I was gifted a Mithila painting by Darbhanga Medical College in Bihar, India; the painting still hangs in my old office in Nepal). Rajput paintings are known for their opulent colour.  

Pattachitra is a vibrant art form that originates from the holy place of Jagannath Puri, Odisha, in eastern India. It is also extensively practised in West Bengal. Traditional Warli paintings– the Warlis are a tribe in Maharashtra near the border with Gujarat–of Lord Krishna were also on display as were Gond paintings of love.. Looking at these paintings I was struck by the cultural unity within diversity in India.  

The art museum has two floors and also has a section on erotic art that has a warning about the explicit nature of the material on display at the entrance door. Till today the public has been very accepting of this section of the museum. The museum also has a community space at the side where events can be organized. Several events have used this space; for example, the museum held a competition for letters and poems expressing love to be sent to the museum’s postal address, and some of the winning entries were on display. The Art Museum of Love has created Instagrammable objects and locations for selfies and social media postings. The website of the museum (Sneha Museum in Malayalam, the native language of the southern Indian state of Kerala) is https://lovemuseum.life/. The museum is also on various social media. 

I went with Unni to another museum he curates and manages. Photomuse is the museum of photography. Photomuse was inaugurated by Herbert Ascherman Jr., a renowned US photographer who mainly works in black and white and the rare art of platinum photography. He is the mentor and guide of Dr Unni and has contributed several pieces of his work to the Art Museum of Love and to Photomuse. This museum was in operation at a different location for a few years and in early 2024 shifted to a permanent location at Mattathur near Kodakara. The website of the museum, which has multiple features and offerings (including collections mainly devoted to cameras and photo equipment, a journal, programs, and a gallery showcasing various exhibitions previously mounted at the museum, among others), is https://photomuse.in/. During my visit the first gallery was hosting an exhibition titled “Silence & Chaos.” The exhibition had photographs by different photographers, some depicting silence and others depicting chaos. The major gallery hosts cameras and photographic equipment from various generations and time periods. The old pin hole camera, bellows camera, the auto focus film cameras, polaroid camera and SLRs using film are all on display. Each camera has a small descriptive note providing more information about the object. The pride of the collection is the large format Vageshwari cameras that were manufactured in India and were among the best field cameras in the world. My friend Sanjay Mhatre, an architect, had introduced me to large format cameras and these always fascinated me. The extensive collection is also documented online at https://photomuse.in/index.php/collections 

The museum holds exhibitions of photo collections periodically and these can also be accessed online. Photomuse has a good collection of old photographs; the museum has 1,765 antique prints in its collection. There are a few depicting the birth of independent India. I was intrigued by the photo of the old Cochin Forest tramways, which operated from 1907 to 1963 and enabled the transport of wood from the Parambikulam forest to Chalakudy town. The museum also publishes a journal both in print and online at http://journal.photomuse.in/  

The small town of Kodakara near the Thrissur-Ernakulam highway has two museums that are cultural icons and social gathering places. Dr Unni also has created an open-air art gallery on the premises of the hospital he runs in the same location. Unni, through his arts initiatives, reminds us of the close connection between art and medicine. There are several educational institutions around Thrissur and health students can learn about the close interplay between art and medicine at the museum. These museums and galleries have put Kodakara on the international arts map. So, the next time you visit Kerala, which some have called God’s own country, please do plan a trip to Kodakara. The place is not difficult to reach. The museums are open from 10 am to 6 pm Tuesday to Sunday (closed Mondays). In an increasingly bitter and divisive world, come discover the gentle and healing power of the arts and of love!  

Interview with the Uber-Talented Unnikrishnan Pulikkal, MD

Ravi Shankar Aug 6, 2024

Dr. Unni, a medical practitioner and artist, discussed his rural upbringing, passion for painting and photography, founding PhotoMuse, and balancing art with medicine.

This is an edited transcript of the zoom interview.  

JD: Hello, everyone. I’m Jacalyn Duffin at Queen’s University in Kingston, Ontario. I’m a retired hematologist and historian. Kingston is situated on the traditional lands of the Haudenosaunee and Anishinaabeg peoples. And today I’m chatting with my friend and colleague, Darrel Manitowabi, who is a professor at the Northern Ontario School of Medicine University. 

Darrel, tell us about yourself and your job. 

DM: Greetings, everyone. I would say in Anishinaabamowen [indigenous language]. Thank you all for listening to this. My name is Darrel Manitowabi. I am Three Fires Anishinaabe from Manitoulin Island. More specifically, Wiikwemkoong Unceded Territory, which is on the eastern end of Manitoulin Island and Georgian Bay. 

I currently live in Whitefish River First Nation, which is just across from the island on the mainland in the traditional territory of the Robinson-Huron Treaty. And I am currently the Jason A. Hannah Chair in the History of Indigenous Traditional Medicine and Indigenous Health in the Human Sciences Division at the Northern Ontario School of Medicine University. The acronym for short is NOSM [pron: naw-zim]. And that’s who I am. 

JD: Thank you. I’d like to mention also that it’s a very beautiful, sunny, but extremely cold winter day here in Kingston. We’re at minus 16 degrees centigrade. How about you? 

DM: We are about minus 20 Centigrade, I believe the last I checked, I’m in Whitefish River First Nation as I shared and so, it’s rather cold here, and it’s the coldest time of the year thus far. 

JD: Yes, for us too. And for the Americans listening, that’s about zero degrees Fahrenheit. Can you tell us a bit about your job. You started in 2020. That was right in the middle of the pandemic, basically. And you are the inaugural professor in that chair. Can you tell us about what you were supposed to do at NOSM? 

DM: As you stated, I joined in the time of COVID, which is a less than ideal time, especially when you’re starting a new job. There’s intermittent openings, which is very difficult for someone who needs to access a library. 

One of the more recent collaborations I had just by way of example is with Dr. Geoff Hudson, who is a historian of medicine at the medical school, we have a chapter in the book, An Accidental History of Canada [McGill-Queen’s University Press, 2024). And we wrote about Manitoulin Island accidents from settler and indigenous perspectives. And it was the most difficult chapter I’ve ever had to write because I couldn’t access anything. Everything was closed. And when it was open, it was only for a narrow window. It almost felt as though you needed to expedite your process, right? And that’s how I would describe that initial experience just by way of example.  

A lot of my work involves working with elders and traditional healers. My approach to this Chair is quite a bit different than it has been in the past. I’ll just give you another example of that. When I first started this chair, I went to the indigenous community to help inform the kind of work I would do. Typically, an academic embraces autonomy and academic freedom and all those sorts of things and goes about doing things that are in part conditioned by the academy and the expectations of that. I reversed that and I took an approach wherein I am conditioned and in sync with community. And one of the things that community determined to be important is to build capacity in understanding traditional healing and its place within contemporary society and that involves coming together. So, since 2020, I’ve been consulting with elders, traditional healers, and we’ve been determining a pathway forward. And it’s a continuous preparatory aspect of the work that I’m doing, I’ve been focused mostly on that.  

I consider my approach to be a kind of a two eyed seeing, which is this perspective of blending Western knowledge with indigenous knowledge. But the way that I’ve operationalized it is I’m blending university logic and expectations with community logic and expectations. And I try to do enough of the university stuff to satisfy those eyes and I also concentrate the balance of my time with community. So it’s a juggling act. It’s a balancing act, recognizing that there’s an incompatibility in essence with how community sees knowledge production and would like to see it done and how the university does. The university is a hierarchical individualized process whereas in community it’s more of a collective process. We do things together. We are a collective group of authors and collaborators rather than a hierarchical individual leading a group. I’m not leading anyone when I’m in community. I’m working alongside. That’s what I’m doing there. And Indigenous Medicine Stories –what we’re going to talk about here– is the essence of what that means. It’s a kind of bridging of those two worlds. It’s like bridging those two ways of experiencing and practicing knowledge. 

JD: Well, right away you’ve kind of explained to me the origin of Indigenous Medicine Stories they seem to be an extrapolation of what you envisaged your job to be. Did you have the idea before you went for that job or was it something that came to you while you were inventing what you should be at NOSM? 

DM: I’ll come back to COVID. COVID explains a lot. During COVID, we needed to modify our curriculum to reflect remote learning. And given the work that we were doing, we do a lot of experiential stuff, having elders come into the classroom. 

At the medical school in year one, there was even an indigenous placement that that became a bit of a challenge. We ended up doing things like everyone else in front of a computer screen. And that’s a challenge with learning. It’s exhausting. I remember those long days of just staring at my computer screen doing presentations and not having that human connection. And a few of the students had raised a question that we should consider alternative ways of experiencing this learning. 

And one or more (I can’t remember if it was one or two or more than that) mentioned podcasts. And I thought, that’s an interesting idea. And at the same time, I was thinking about a project that involved collections of life histories of elders and healers akin to a book by David Newhouse and Don McCaskill, that was, In the Words of Elders Aboriginal Cultures in Transition [U Toronto Press, 1999). They essentially traveled across Canada and they collected life stories of elders from across Canada. And it’s literally their life story. It’s their narrative that forms the basis of each chapter. And also this other project that took place, the Indian Film Project that was at the University of Regina, the Canadian Plains Research Center. And what they did is they traveled across …or someone traveled across Canada. It wasn’t always the same person. And they sat down with people of significance of indigenous ancestry who might have been an elder or a leader or a healer, and they just asked questions, and they collected a transcript of what their experience was like. And it almost seemed as though it was a bit of a random process that you weren’t quite sure what the purpose of that interview was, but it produced a lot of important information and an important historical record. Many of those individuals are no longer with us now. It’s become an important archive. And so when I was thinking about those three things all at once, the concept of a podcast came about and I thought I could have guests speak about their experiences in their own words. And I could generate an archival record by way of the voice, but also by way of the transcript.  

I was having a conversation with Anne Avery at the Associated Medical Services, and she had mentioned that they had done a podcast. We continued talking and came to the conclusion, why not collaborate? Why not work together on this? That’s how it all came about. But it was it was the intersection of all of those things that were happening that led to this. 

As I thought about it further, and I’ll just expand upon this, one of the things that I consider to be an interesting aspect of the podcast and of the approach that I take is having the guests speak about themselves in their own words, which also reflects back to what I mentioned before in the sense that I try to speak as little as possible and I try to highlight the voice of the person, have the person talk about their life in their own words, on their own terms. And I’m merely a conduit to that or a bridge to opening the door of understanding. 

It also reflects the fact that academia traditionally and in the research that I’ve done, I do a lot of oral history research where I speak with elders. And one of the frustrations I’ve always had is that they have so much important ideas to share. But I must edit things down to one or two sentences or perhaps if I’m lucky, five sentences. And I thought, there needs to be a mechanism or a medium by which that comes to an end. That was also an aspect of it. But it’s also that relationship. I don’t see this as being the authority over. I see this as a visit, a way to learn and to engage. And I also specifically approach it by way of highlighting the life history. Quite often elders, academics, and others are called upon to do something specific to their job, whether if you’re an elder, you’re doing a teaching, or if you’re a researcher, you’re discussing your research. Rarely do we ever have a chance to understand where are you coming from? Who are you? Where did you grow up? Who were your teachers? What was that like? And so it’s really about them telling their story. It became a way for me to to navigate or balance or weave in this interface of the university and the community in a creative way that allows for that outcome. And one of the significant aspects as well is the educational component. And it links to my chair, the AMS chair. One of the features of it is to help –And you might have your own perspective on this, Jackie, because you’ve had a longstanding chair–is to [help] find ways of inserting these kinds of perspectives in medical school curriculum by way of encouraging research with students or advancing curriculum in a particular kind of way. Doing scholarly activities and creative work such as this helps to demonstrate to biomedically inclined future physicians that there is a humanistic aspect to healing and medicine and also an historical aspect. Those are all coming together and are all influencing how things came to be. So that’s a little bit of an insight into the origin. 

JD: Well, for those who haven’t been to look at Indigenous Medicine Stories–and we will certainly explain at MedHum how to find them–they are a wonderful cluster of podcasts. They’re not short. They run up to an hour or so. And right now there’s about 22 of them there You’ve already answered some of my questions about not only where it came from, but how it can be used. I’m interested in if it is difficult to get people to talk. I know you have a PhD in anthropology, and I believe you used oral history to get there when you were writing your thesis. But is it difficult to encourage people to talk, especially if they’re being recorded? 

And one quick question. Tell us about that beautiful image you have behind you, which is the title page of Indigenous Medicine Stories. 

DM: let me get to the title page, the artwork first, then I’ll jump into that. I needed a logo and at the time I was searching for ideas and one of one of the initial concepts I had was to take a picture of medicines. And so I did that but there’s a young community member where I live here, Whitefish River First Nation, a young aspiring artist by the name of Nevada Anwahtin. Nevada had a collection of paintings, and I just was interested in seeing if she had something that kind of really connected. And once I saw this, I knew right away that it was the perfect piece of art that would serve as a logo. And it also represents the future because it’s from a young Indigenous artist who’s a female. 

And also, it reflects ceremony. The image is of us, of what we understand to be a sweat lodge. There’s different words for that word. But anyways, it’s a sweat lodge and there’s a vision that is coming out, this is my interpretation. Nevada will have her own inspiration and interpretation. But this is what I saw when I looked at it. It’s engaging with the spiritual essence of ceremony and it’s in beautiful colors. So I thought, this is the art work that I needed. That’s how that decision was made. And to answer your next question about Is it difficult? I would say in part what I’m trying to do is to capture different stories and experiences. I’m looking for different standpoints, right? you might be a practitioner, or you might be balancing for instance, a social work perspective to helping and including indigenous knowledge and indigenous helping in that. 

You might be a researcher, for instance. You might be from a different locale or a cultural experience or group. Those are all kind of factoring in. And it’s also about convenience. , I’m doing this alongside my everyday work. If I happen to be in a part of the province where I know somebody lives, I’ll try to make that connection. One of the essential aspects of this is to have that face to face. And so it’s a blend. The ideal for me is to do an in-person recording if that’s possible. But I’ve also done them remotely, remote recordings through Riverside, by way of example, if I know it’s going to be Riverside, I make it essential that I meet with them in person beforehand. 

The more challenging part is to build that relationship because there needs to be some work invested into that. I’m not saying a whole lot, but there needs to be some kind of connection because as human beings, we interact face to face and communicate in those kinds of ways. So the initial first grouping was a bit of a balance between those who had somewhat known or had known of me. I had met them before and in some instances that might not have been the case, but it was mostly that scenario. They were comfortable with me.  

I also emphasized the spirit and intent, right? It’s about education and they …the guests on the podcast recognize the context in which things are, where indigenous peoples are not understood. There’s a lot of discrimination, a lot of conscious and unconscious bias in social interactions. There’s an exclusion of these ideas in the formal education. All Indigenous peoples are experts in these things. They know it. They know it from their inner essence and their being. They understand the potential that education can have in trying to address this. From my perspective, they see themselves as trying to change things, as am I. We both recognize that.  

I centralize education because with education, I’d like to humanize an understanding of traditional healers. I’ve been talking about indigenous issues for my entire teaching career. I’ve been mentoring. I’ve just passed 20 years of doing that now. And since the beginning, there’s this reaction towards anything indigenous. You could just say the word “indigenous,”–I’m going back 10, 15 years–and you can trigger a response by some people. You could trigger a physiological response just by mentioning “Native,” “First Nations,” “Inuit,” “Indigenous”, etc. I’ve always known that and I’ve experienced that in the classroom.  

When I speak about Indigenous healing, especially towards a group that has is trained in the sciences, for instance, there’s this instant reaction towards it with the assumption that it’s inherently unscientific, or it’s all made up. It has no place. It’s just this interesting cultural phenomenon or social phenomenon. If you look at it, if you use science to look at it, you could draw the conclusion that there is an essential inherent bias in understanding this because there’s assumptions based on that. Science is not supposed to be based on assumptions and bias.  

So, I thought that if people could hear the story of the person, hear their life experience, they could recognize that this is a human being that exists in this world, and they have experiences just like I do. And I have no right to assume that they’re inferior because of the socialization in which I come from in respect to indigenous knowledge and indigenous peoples. So that’s part of it. It’s about educating and even, I’ll just add, for indigenous peoples themselves. I see this as a new medium of communication. And it’s a consequence of the impact of a digital world in which we’re faced with. It’s really adapting to that. In times in the past, this knowledge would have been shared by way of storytelling that may have been on the land, it could have been around a table. I grew up at a time when there were very little TV channels. I like to say two-and-a-half channels because the third channel worked half the time. I spend most of the time outside in the community . In the community, I would just be around and in the process of just being around, I learned a lot. 

I learned a lot because I would be around stories, around people telling stories, around elders who would be telling stories, and I would just be part of the furniture in that sense. Those days are not here in the present. Maybe they’ll return in the future. So I see this as a new form of storytelling, a digital storytelling, right? And there’s some literature out there on it Jennifer Wemigwans has a book on it [A Digital Bundle: Protecting and Promoting Indigenous Culture Online, U Regina Press, 2018]. 

I see this as being part of that process, right? It serves a purpose for different audiences in a medium that is compatible with both of those sides, right? And I think that both sides are looking for something different. Those who are just curious about what this all means, for instance, from a non-Indigenous perspective. But from Indigenous perspective, there’s a built-in marketing because many of the people that I’ve spoken to are known. They’re known in the indigenous community, but they’re not known outside of it. That also relates back to your original question about inviting people. I know who these people are. We’re part of a community. 

We’re part of people who know somebody, right? We’re not so far removed in this area anyway. And I’m also focusing initially mostly on Northern Ontario, obviously because that’s where I work, but also because there’s a tendency to invest in creative works and knowledge production in places where capital is concentrated. And in the province of Ontario, it’s concentrated in southern Ontario. 

So you have this natural tendency, I suppose, within that framework to collect knowledge in those areas. In Northern Ontario, there’s little research in all aspects of research in itself . I think I have a responsibility to reflect and it also comes back to the social accountability mandate of the Northern Ontario School of Medicine University, which is to reflect the society in which it is located. And I tried to reflect the work that I do in the society in which I’m located. I’ve said quite a bit of things there. That’s kind of where things are at. 

I’m always recording and I don’t know how long this is going to go, but I’m going to take it as far as I can and continue this work because there’s a lot of important lives that are being lived out there that many of us have not learned about or heard about. 

JD: Right. Thank you for that wonderful answer. So I understand that, first of all, a lot of people in the community and second of all, all of your interviewees, as well as yourself, feel a responsibility to pass on knowledge. And this educational opportunity is a trigger for why they might accept to be recorded. I have two more questions. They’re “medicine” stories, in looking at some of them, I’m interested in hearing you tell us what you think “medicine” is or is about, because “medicine” is there to treat disease. We take medicine to get rid of disease. And “healing” is a very important word in your podcasts. What is the “medicine”? What is being healed? 

DM: I’m glad you asked that question. It brings to mind that I neglected to talk about something else. Traditional medicine or traditional healing is often stated as being holistic that’s maybe a common denominator in most of the definitions you come across or what people have to say. However, the stereotype is that it’s limited to plant medicines. It’s limited to this material consumption of something to relieve something, to have this particular outcome. And that’s a Western paradigm within healing in itself. 

 And I’ve heard this from healers that it’s more than that. Really that’s what I’m getting at. Really what they’re doing. This is also a form of indigenous pedagogy, which is a way of indigenous learning. And storytelling was that way of learning, of teaching and learning but there was also, obviously, observation that happened and you go about it and do what you need to do. But one element of it [medicine] is storytelling. 

I’ve read these historical accounts that indigenous peoples would tell stories all winter long. So this is the time of storytelling, a time of education. That’s the legacy. And often indigenous peoples will tell stories by way of an answer. This is what I try to teach in the classroom that when we have a placement at NOSM for students to go into an indigenous community for four weeks. I help them prepare for it, I tell them that you’re going to ask an elder a question. They’re going to tell you a story and in that story, they’re actually answering that question for you. And you may not know the answer to that question immediately, but it might come a time in the future when you recall that story and you make that connection. 

It’s a form of autonomous learning where the teacher or the elder or the storyteller tells the story and it’s up to the individual to the listener to “get it,” or not. And at some point in time they will. So, in essence, it’s a bit of an assessment like where are you at in terms of your knowledge and comprehension and understanding? I use that by way of an example because the stories that are being told are precisely about Indigenous healing and indigenous medicines in the sense that they’re a reflection upon the legacy of colonialism in Canada and the violence it is instilling on people of the past and the present and the impact that that has on people’s lives and how that translates into and manifests into these physiological outcomes that a biomedical lens can offer.  

But it also speaks to you from a biomedical standpoint; you could look at the impact of stress on health. You could look at childhood development. You could take all of these frameworks and apply them if you wish to do so. However, the way that it’s spoken about, it’s about It’s about trauma and healing and how that’s overcome. And often I will come across or and even know that that these seemingly abstract human experiences are actually medical or medicine for indigenous peoples. For instance, just learning more about teachings can offer healing for an individual who is yearning for that; maybe through the colonial process [it] was excluded. And it’s a void in their life. And they need it. They need that reason and purpose and identity and a sense of being and understanding. 

That relates to mental health and also physical health as well. They’re seeking an answer to their situation. And this is helpful for them. It’s also, I like to say, not the only solution, but it’s part of the answer, right? So obviously, meeting in person with someone is the best possible outcome. But it’s maybe a gateway towards that, ideally that it offers an opportunity for those to reach out to others. 

It’s also about them telling us about what they see it being. And again, it’s from different perspectives, right? You might have a researcher who’s chatting about what this means. It might be an indigenous-physician guest who talks about finding a way to include. It could be an elder. Knowledge is a form of wisdom, and some of that relates to a healing wisdom And it could be a practitioner or it could be a helper. It could even be about human relationships. You could translate some of this into a social determinants of health framework. 

So there’s various ways of interpreting, but it’s much like the story of the artwork that I shared that is the logo. It allows for the listener to draw the knowledge that they need or the teaching that they need, at that moment in time, at the level that they’re at, on their own terms. There’s nothing here is being imposed on anyone. When I’m asking the questions, I’m simultaneously processing what the listener may be thinking. And I deliberately do not reveal too much of the details, for instance, and I leave it up to the listener to figure that part out. There is in some part of responsibility but I’m not doing it for the person, and for instance, someone might be talking about the meaning of ceremony in their life. And I don’t go too deep. I just kind of touch upon the surface and it’s up to the listener to dig deeper if they need to. Right. This is what I’m talking about here in terms of this non-hierarchical way of learning this indigenous pedagogy, where there’s responsibility that is understood to exist with the person who seeks to learn. 

 And the teacher, or the one who’s telling the story, is not imposing things in part somewhat seemingly abstract, but is directly saying what needs to be said. And giving that option to the listener: this is what I’m telling you. If you don’t understand what I’m saying to you, it means you have more work to do. 

JD: Yes. 

DM: If you do understand what I’m saying to you, then you have a choice to take something from this if you would like. You don’t need to do so. And that is it. 

JD: That’s very intriguing because it is a different way of conceiving of medicine and also of healing. And I got the message early on in looking at the podcasts that the disease we’re healing is collective, held in our society, a historical legacy in a sense. The last question I want to ask you is about “stories” themselves as a form of knowledge. You’ve made it quite clear that it’s a way of answering and giving information among First Nations people. It’s a traditional way of understanding. But you’ve got me thinking, since I’ve been looking at your podcasts, that medicine does that too, in the sense that we take a history of every patient and we’re not supposed to impose too much, just as you suggest [in your work], but we curate those histories. And the other way that storytelling is a form of knowledge in medicine is the case of the “case histories,” which go back to antiquity. In the sense that we build a disease concept from multiple case histories of people who’ve had similar symptoms or similar experiences. And so for the last question, I want you to talk about storytelling as a form of knowledge. 

DM: Okay, … Let me situate that with Anishinaabe understanding of things. There are two forms of stories. They’re one form of storytelling is the tabatacamowin, which is stories of the past of events that have occurred. And there are sacred stories. And that is referred to as atiso’kanak. 

The difference between those two? Well, “sacred” speaks for itself, they’re mythic, sacred. One of those stories is alive and that’s atiso’kanak. And those are sacred stories. We don’t really engage upon sacred stories in Indigenous Medicine Stories, but we do focus on tabatacamowin, those stories of lives lived. I just wanted to kind of situate that. Those are two forms of storytelling.  

 I think to engage with your answer, at the start I see commonality in humanity, and even commonality in intellectual paradigms. It’s almost as though we’ve been conditioned to be in opposition. In many ways, we’re still tribal peoples at our core and we’re the scientists and you can interpret this as being a “story,” but we’re going to call this a “case history” and we’re going to call it this. And it’s not going to be that, but as you’ve described, you’re, you’re talking about something that’s very similar. And some of this may be indigestible to some and incompatible, but at some point in time, maybe that might not be the case, but that’s how I approach this. I see commonality.  

I often talk about narrative medicine, you’ll be familiar with that, on how that’s kind of framed as this academic understanding of what you described: this way of telling our stories to the physician or even maybe to the patient sometimes. And I bring in storywork. And this is when I talk about this academically, like I’m doing now. Jo-ann Archibald, a Canadian academic from BC, indigenous Canadian academic, writes about “storywork” and a way of teaching [Indigenous Storywork: Educating the Heart, Mind, Body, and Spirit, UBC Press, 2008]. But it really comes down to the inner essence of this history of indigenous learning in itself, right? And I just described that atiso’kanak.and tabatacamowin and how , stories have always been part of things, right? 

I like to tell this story about how I was doing this project with the First Nations Information Governance Center on Indigenous perspectives of poverty. And I was speaking to a Mi’kmaq and this is in the east of Canada, a Mi’kmaq, I’ll say, knowledge holder, academic. I asked him six questions and he told me six stories, and the stories were over two hours long! And it was after about maybe 90 minutes when he paused and he confessed. He goes, “You know, I don’t know if I’m answering your question and I don’t know if you’re understanding what I’m saying.” 

And I said, “I understand precisely what you’re saying. Keep on going.” When he came to the end in that research project, I just felt that at a loss because I could only capture maybe a minute or two of nearly two hours of very, very interesting stories that he was telling me that were just vibrant and alive. I could just feel and sense the detail of what he was talking about. Really, that’s what this is all about. It’s about demonstrating the utility of indigenous storytelling in educating because that’s what these are all about. And an elder or storyteller or, just an elder or, most will tell you a story anyway, right? They’ll just jump in the story and It’s just how it is, right? And it’s almost like this natural inclination of how to answer your question, because I think it makes it more interesting. When I hear stories about people’s lives and about experiences that they’ve had, it’s more interesting. I think you can remember it in much more detail.  

I’ll just give you another example. I was going down this body of water close to where I live, where I hadn’t gone to before when I was new to boating. And I was speaking to an experienced person in the community who knew the waters very well. And he was telling me by way of story about how to navigate those waters. And it was almost like generating a mental map in my mind through the anticipated experience that I would go through in order to really kind of paint a picture of a map of where to go. And he also did that with even hunting, where he would tell me, okay, you got to go here and then he would kind of generate this portrait of this place. And as I was going through those experiences I could hear the voice in my mind describing what I was seeing as I was doing it. It was kind of like an original kind of a GPS kind of experience.  

And I’ll just give you one more example of this. When I was early in my career, I was teaching indigenous studies at the University of Sudbury, which was formerly a federated University of Laurentian University in Sudbury Northeastern Ontario and I had invited an elder to come speak to the class and I thought they were learning all of these things. I was teaching a course on Indigenous tradition, culture, and spirituality. So I thought maybe I’ll invite an elder to the class. And the elder came in and I just gave a general idea, a general orientation to what the content was about. I didn’t impose what they should talk about, but I just offered that’s a useful direction to go. And over the course of an hour, the elder was telling stories about life and life stages and all of these things. And I found it fascinating. I was just captivated myself while sitting in the audience with the students. I just took a little pause and I looked around and I realized that some had no idea what was going on. 

They were expecting this structured lesson plan with learning outcomes and content that would correlate some way to those learning outcomes and then, if they were being evaluated, there would be some kind of assessment associated with that. And I just came to the realization that there is something different here and there’s something worthwhile to consider. After the next class, I had basically deconstructed things for students to explain that this is how things happen. I began to learn that this is something that I needed to explain because it’s just something that just happens in its natural form. 

Also, and as this relates to myself here, I didn’t immediately understand the meaning of all of what that elder had stated that day. I understood some or most of it. And it was probably about maybe five to seven years after the fact that I remembered that story and I still remember the story and this story, this is like 15 years ago, right? So this maybe speaks to the power of story in itself. It was five or seven years after that point in time that it was like a Eureka! moment that this is what that elder was telling me. I didn’t understand it at that time, but now I understand it. And I remember that story and I remember what they were trying to tell me and they were actually doing something that they thought was important for young people to know. 

At that time, I was young myself. Stories are very powerful. And I think it’s the ideal medium to transmit knowledge and to even translate knowledge in this essence and if the listener does not yet know what’s going on, then at some point in time, possibly they will. And they may return back to the story and find something new. 

And that’s the neat thing about learning. Sometimes you return back to a book you read 10 years ago and you find something new to learn and understand about it. So the same is the case with Indigenous medicine stories. 

JD: That’s wonderful. Darrel. Miigwech! Thank you so much. 

DM: Thank you for having me. And I look forward to sharing more Indigenous Medicine Stories with all of those who are interested in hearing them. 

Darrel Manitowabi is an associate professor in the Human Sciences Division at the Northern Ontario School of Medicine (NOSM), Sudbury, Ontario. He is a citizen of the Wiikwemkoong Unceded Territory, and he currently resides in the Whitefish River First Nation. He is an applied, medical and Indigenous anthropologist with research interests in Nishnaabe ethnohistory and Indigenous gambling, Indigenous social determinants of health, Indigenous healing, Indigenous-state relations and Indigenous self-determination. His research and publications examine how the historical legacy of, and contemporary expressions of colonialism impact the health and wellbeing of First Nations communities. Furthermore, his research examines how First Nations communities are active agents in decolonizing the Indigenous-state relationship through centring Indigenous perspectives in health, education, and governance.

Indigenous Medicine Stories Podcast

Located near Woodstock, geographically and culturally, Jened offered a space free from the discrimination the summer residents encountered elsewhere. Campers engaged in uninhibited physical activities, uncensored storytelling, self-governance, mutual caretaking, real friendships, irreverent insider humor, romance, and fun. One powerful, sobering scene allows viewers to overhear campers with diverse disabilities share common experiences: being disrespected or ignored at school, overly protected at home, isolated everywhere. Another tracks the campers’ hilarity and pride over an outbreak of “crabs.” One camper declares his counselor’s demonstration of how to kiss, “Best physical therapy ever!”  

The second and longer part of the film follows several former campers into their adult lives. They become parents, spouses, professionals, and disability rights activists at a crucial historic moment for disability legislation. Both parts of the film propose that the liberty and solidarity experienced at Jened emboldened several of the campers to seek opportunity and equality in the world beyond their camp. 

While former camper Jim Lebrecht narrates the film, Judy Huemann—who died in 2023—is its political and moral center. A wheelchair user, Heumann rose from Jened camper to counselor. Campers revered her for successfully suing the New York City Department of Education for the right to teach. When she and several former campers unexpectedly reunited in Berkeley, California, they participated in the Independent Living Movement that famously started there. An astute leader, Heumann inspired an astonishing 25-day sit-in at the Department of Health, Education and Welfare (HEW) offices in San Francisco’s Federal Office Building in 1977.  She and her disabled colleagues risked their health and their lives—they slept on the floor and improvised medical necessities—to convince HEW to enforce the anti-discrimination section of the 1973 Rehabilitation Act: Section 504. Heumann’s uncompromising standoff with the HEW representative is unforgettable. As is her daily urging for the occupiers to hold fast. Regular deliveries of food, supplies, and solidarity from the Black Panthers and other marginalized groups fueled the protesters’ determinism and ultimate success. 

In other archival footage, Heumann, demanding accessible taxies, leads demonstrators to gridlock traffic in New York City intersections. Still other protestors abandon their wheelchairs and pull themselves up the steps of the U.S. Capitol to insist on disability civil rights. Recently filmed interviews with several former campers affirm that, despite the work toward disability justice that remains, they live fuller, more vibrant lives as a result of their camp experiences and the legislation they demanded.  

Crip Camp is an indispensable film because it’s told from the rarely seen perspective of disabled teenagers . The Jened campers’ irrepressible personalities, candor, and accomplishments demolish stereotypes about disability. It’s simultaneously painful to confront the inhospitable world they had to navigate and still do. The film’s co-directors, Jim LeBrecht and Nicole Newnhan, prompt us to ask why histories of the civil rights projects of the’ 60s to ‘70s have largely ignored the struggles and successes of disability activists. Yet as Crip Camp raises awareness of the “nothing about us without us” campaigns for disability rights, it also makes me restless for more documentaries. Without doubt, we have more to learn about the history and politics of the passage—and enforcement—of laws through the 1990 Americans with Disabilities Act and its 2008 Amendment.

Crip Camp: A Disability Revolution 
Directed by Jim LeBrecht and Nicole Newnhan 
Higher Ground Productions: 2020, RT: 104 minutes 

For more information about Crip Camp and its Impact Campaign, please visit https://cripcamp.com/

One of the most successful patient-artists was Auguste Forestier, hospitalized at Saint-Alban at the age of 27 after placing pebbles on a train track and causing a train to derail.  After his discharge from treatment, Forestier remained at Saint-Alban for the rest of his life, where he worked in the kitchen. He began to create toys for the children of hospital employees using discarded materials, even butcher’s bones.  In this exhibition we see not only a boat created by Forestier from scraps of wood but also a print of Tosquelles proudly holding up one of Forestier’s boats.  

The work of Saint-Alban artists came to the attention of French artist Jean Dubuffet, who, after reading the 1922 book Art of the Insane, had founded the Art Brut (also known as Outsider Art) movement.  Dubuffet’s attempts to collect it were at first greeted with skepticism by Tosquelles.  However, the success of Forestier (eventually he even came to the attention of Picasso) was such that the profits from his work were used to help fund the hospital.   

At its previous venues in Europe (the show originated in Barcelona) a larger number of pieces from Saint-Alban were displayed.  At its US venue, the show has been augmented with work from American asylums, which prove to be a highlight of the exhibition.  Even without a Tosquelles to inspire them, these patients created beautiful and fascinating art.  

We see, for example, a coat made by Myrllen, a schizophrenic patient from Tennessee.  The patient had reportedly worsened in response to such few treatments as were available at the time.  In desperation, she was given discarded rags and threads.  What she produced gives us a window into her condition, with strange words and figures whose meaning was known only to her.  Ironically, after making several such pieces the patient lost her creative impulse and stopped sewing once put on Thorazine, the first antipsychotic medication.   

Another piece, a watercolor entitled “An Antarctic Scenery,” is one of the earliest known American asylum paintings (c. 1816).  The patient-artist, Richard Nisbett, in his paranoid imagination has chosen to depict “a fleet of murtherous Pirates” invading Antarctica. Nisbett was a patient at Pennsylvania Hospital in Philadelphia under the treatment of none other than Benjamin Rush, often considered to be the father of American psychiatry.  

Although the exhibition closes in August, a book (which will be for sale at the Museum and online) is expected to be released in November 2024.  The link to a virtual conversation with the show’s curators is given here:  https://www.youtube.com/watch?v=s9j3fMn0xJA (1 hour 19 minutes).

Francesc Tosquelles is frequently mentioned in The Rebel’s Clinic, by Adam Shatz,  a recent biography of the psychiatrist, Frantz Fanon.

A Tosquelles Glossary from the Barcelona exhibition is also a helpful tool: https://www.cccb.org/en/exhibitions/guide/francesc-tosquelles/237849 

Illustrations: 

Auguste Forestier (1887–1958, France) Untitled (Boat), 1935–1949, Wood, fabric, metal, leather, nail, 29 1/2 x 45 1/4 x 9 1/2 in. Centre Pompidou, Paris, Musée national d’art moderne/Centre de création industrielle, ART BRUT/Gift of Bruno Decharme in 2021, AM 2022-43. 

Romain Vigouroux (active mid-20th century, France), Francesc Tosquelles on the Roof of a Building at the Saint-Alban Psychiatric Hospital, Holding a Sculpture by Auguste Forestier, 1947, Gelatin silver print, 7 x 4 7/8 in Collection Family Ou-Rabah Tosquelles. 

Richard Nisbett (1753 England-1823, United States) An Antarctic Scenery, 1816, watercolor.  Collection of The Library Company of Philadelphia.  

American Folk Art Museum  
Lincoln Square, New York, NY 10023
Folkartmuseum.org