Photo by HAPPYRICHSTUDIO via Adobe Stock

When I learned I had precancerous lesions on my cervix and that my doctor was recommending I remove them surgically, my reaction went as follows: One, muted panic. Two, I’m definitely going to die. Three, Wait, what does that even mean?

So I did what anyone in possession of an Internet connection in 2021 would do: I went online to do my own research. The Internet confirmed what my physician had told me: the procedure, called a loop electrosurgical excision procedure, or LEEP, is a common one, in which a heated wire is inserted into the vagina to remove the offending cells.

I also found a host of women complaining of unexpected side effects. One article, in Cosmopolitan, was particularly concerning, full of stories of post-LEEP sexual dysfunction from women who had fully healed, yet who were unable to orgasm, feel pleasure during penetration, or have pain-free sex.

I mentally rehearsed the discussion I’d had with my gynecologist. He hadn’t warned me about any of this, which worried but did not surprise me. He had seemed more concerned with protecting my ability to get pregnant, even though I had repeatedly told him I was uninterested in bearing children. With scant scientific literature available—studies on post-LEEP outcomes were mostly focused on the procedure’s efficacy in preventing cancer, as well as pregnancy outcomes—it felt impossible to assess whether these risks were real. Was I about to subject myself to a procedure that might save my life, but at the cost of one of the things that brought real joy to it?

*

The disconnect between our experiences with medical professionals and what women and people assigned female at birth (AFAB) hear from our peers has been a central concern for feminist health activists for decades. When it comes to understanding what’s going on with our bodies, who can we trust?

For much of the twentieth century, the health-care system overtly treated AFAB people as unable to make decisions about their own bodies. Contraception was not decriminalized in Canada until 1969, and limitations on abortion were struck down even later, in 1988. Birthing people often had to endure labour alone, without partners present, and without the freedom to decide on pain relief options. Many women were ignorant of even the basic anatomical realities of their bodies.

In the 1960s and ’70s, activists dissatisfied with the limitations imposed by a misogynist health-care system, regressive laws regulating their bodies, and chauvinist doctors began to organize. They formed self-help groups, opened community clinics, and ran underground abortion networks. They performed vaginal self-examinations using a speculum, a flashlight, and a mirror.

What became known as the women’s health movement was grounded in a belief in empowering women with access to information about their own bodies and their sexual and reproductive health that was being denied to them by licensed health-care providers. In the U.S., the Boston Women’s Health Book Collective published revolutionary health-education text Our Bodies, Ourselves in 1970. Inspired in part by that text, a Canadian group called Women Healthsharing launched a quarterly magazine, which ran from 1979 to 1993 with a mandate to “take health out of the hands of the experts and return it to our own collective and individual hands.”

“The media landscape for women’s health information and feminist health perspectives in particular was dismal” at the time, says Connie Clement, founding managing editor of Healthsharing and longtime public health activist.

Healthsharing featured a mix of experts and lay writers reporting from across the country. “We always tried to write for lay women and women who had training in health. And I think it was a huge success for us that we had nurses and doctors contributing and reading, and we had women who had no special knowledge,” Clement says.

The subjects of Healthsharing ’s coverage were wide-ranging. In the inaugural issue, collective members Madeline Boscoe and Kathleen McDonnell penned a piece exploring birthing options in and out of the hospital, in response to feelings of “powerlessness, ignorance, and alienation from our bodies and our surroundings” in childbirth. Multiple issues reported on the use of Depo-Provera, a controversial contraceptive with potentially serious side effects. One column crowdsourced health information from readers (“We are trying to find out more about cervical caps in Canada,” read one callout). Other stories, like a piece on the labour conditions of garment workers, looked at the wider social and economic status of women in Canada.

This kind of education was key to both the women’s health movement and to second-wave feminism more broadly, grounded in the belief that knowledge was a precondition for enacting social change. “The whole feminist health movement was trying to change the social context of women’s health, [and] the structural conditions that influence health,” says Clement.

While it may seem like we are lightyears away from people not knowing what their own vulvas look like, as I peruse archival copies of the magazine over 30 years later, I am struck by how many articles overlap with current hot-button topics. The desire to balance “expert” medical opinion with the layperson’s experiences, the critical questioning of controversial pharmaceutical solutions, the attention to broader social, economic, and political conditions: it’s all in those pages, and it can be bittersweet to see how many issues are still relevant today, a testament to how slow progress can be in these contexts, and how easy it can be to roll it back, especially when we forget what has come before us.

*

I came of age in the 2000s, long after the era of the Women Healthsharings and vagina colouring books of women’s lib. I instinctively shied away from the diet-centric, fatphobic content in teen girl magazines. Thankfully for me, there was an entire ecosystem of feminist writing I could turn to online which shared both individual women’s experiences and fact-based reporting on our health. From blogging platforms Tumblr and LiveJournal to linchpin publications Bitch and Jezebel to private and semi-private groups of people with the same issues, for a while it seemed like the Internet could deliver on the promise of creating networks of knowledge in ways that mattered, filling the gaps where traditional media failed.

But by the time I was doing a deep dive on LEEPs, the online landscape had transformed entirely—in no small part because of social media, especially TikTok. The short-video sharing platform has become a major source for health information, especially for young women. In 2024, a survey study in the journal JMIR Infodemiology found a majority of U.S. women between 18 and 29 used TikTok for health information. Users post about vaginismus, birth control, orgasms, squirting, perimenopause, endometriosis, fibroids: I could go on. Some of these videos are created by health professionals, but many AFAB people post in the spirit of helping others through sharing their own experiences.

When I type in “birth control” on TikTok, the results are as follows: a “wellness”-focused woman encouraging natural planning, i.e. tracking your menstrual cycle to understand when you might be ovulating; a self-described nutrition coach listing ways the pill supposedly “robs us of our health;” and a sex educator responding to a question about birth control that doesn’t involve hormones.

In some ways, this knowledge ecosystem seems like an outcrop of the activist efforts of yore, grounded in information-sharing between peers and often using the language of increased bodily autonomy. Topics like hormonal birth control’s effects on the body are sometimes grounded in
legitimate concerns. Although these contraceptives are both considered safe overall and highly effective at preventing pregnancy, rare life-threatening complications can occur. There is research investigating the link between birth control and chronic inflammation that can lead to cardiovascular problems, blood clots, and mood disorders. Meanwhile, for methods like intrauterine devices (IUDs), for example, some report extreme pain during insertion, feeding into concerns that women and AFAB people’s pain is being dismissed by health-care providers.

More problematically, however, discussion online about birth control can quickly veer into right-wing misinformation territory, inflaming fears in an effort to get people to abandon contraceptive use altogether.

And in countries like a post-Roe U.S., where some states are increasingly implementing restrictive abortion laws, the stakes of an unwanted pregnancy can be high, says Dr. Jenny Wu. Wu is a medical resident in the department of obstetrics and gynecology at Duke’s School of Medicine; she studies women’s reproductive health information shared on TikTok.

“It’s a complex conversation to navigate with my patients, when they tell me they don’t want hormonal birth control and they want to do natural family planning in a state where we have limited abortion access,” shares Wu from her home in North Carolina, which in 2023 banned abortions after 12 weeks with limited exceptions. (Both surgical and medication abortion is legal in Canada and free to those with access to territorial or provincial health care.)

Wu says the level of misinformation propagated online about reproductive health is contributing to increased levels of distrust from her patients overall. This climate makes it more difficult for Wu and other doctors to have these conversations about proper gynecological care, but it also can mean people don’t go see her at all, don’t receive proper care, don’t get the contraceptives they need or access to screening tests to detect potentially life-threatening diseases. But mistrust of the health-care system, especially for at-risk populations, is nothing new.

*

Underlying the relatively recent phenomenon of online misinformation is the much longer, checkered history of gynecological medicine. In Canada, abusive medical practices like the forced sterilization of Indigenous women are ongoing. Meanwhile, many AFAB people and racialized people feel their symptoms are routinely downplayed or dismissed by health-care providers. It’s not hard to understand why some people would want to avoid the medical system altogether.

Tracey Lindeman is a longtime Canadian journalist and author of BLEED: Destroying Myths and Misogyny in Endometriosis Care. Endometriosis, in which tissue similar to the lining of the uterus grows elsewhere in the body, is notoriously under-researched, misunderstood, and underdiagnosed, which can lead to years of pain and suffering for those living with the condition.

“Endo is a super lonely disease, because you just feel like no one can really understand you and how much pain you’re in,” Lindeman, who lives with endometriosis, shares. For endo patients, frustrating repeated encounters with the medical system can feel more like gaslighting than care. In BLEED, Lindeman writes about asking her boyfriend to write a letter confirming that they didn’t want children in order for her request for a hysterectomy to be taken seriously. Another woman she speaks to experiences a pelvic exam so rough she files a sexual assault complaint; others still are denied referrals to a specialist or have their requests for pain relief dismissed.

Online groups can be a boon to these patients. There are thriving communities, like Nancy’s Nook Endometriosis Education on Facebook, with roughly 213,000 members, that offer a network of information and crucial support—and, just as importantly, the knowledge that those going through this are not alone.

But health influencers hawking cures of dubious provenance and efficaciousness feed off the need of those who turn to the Internet to self-manage their health. Much of the content paints itself as “natural,” implying it is better than “chemical” remedies. Looking up videos about LEEPs, I immediately stumble upon an account that is selling a course on how to “naturally” clear human papillomavirus, which can cause cervical cancer. Another “plant-based health” account shares a video about how “chemicals” cause endometriosis and that you can heal it without hormonal or surgical intervention. These accounts are selling supplements, creams, and cycle trackers, all ways to supposedly take control of your own health or body.

Many of these solutions are obviously farfetched; others have a “science-y” veneer of plausibility about them. But for those people who have been ignored, traumatized, or abandoned altogether by formalized health care, these options may feel like the only solution.

“[The wellness industrial complex] is capitalizing on desperation,” says Lindeman. “People are desperate for help, they’re desperate for answers, and they’re not getting that help, and they’re not getting those answers the conventional way, and so they become really vulnerable to online influencers and online [gynecologists] who are proposing information that lets them maybe try to manage it themselves.”

Enduring racism and sexism in the health-care sector; traumatic personal experiences when seeking treatment; the explosion of influencers promising to help reclaim power over your own body: these all feed into one another so that AFAB people delay the treatment they need, suffer needlessly, and even die younger. We need ways to circulate accessible, evidence-based information, both from other women and AFAB people and medical professionals, which build momentum to tackle these much larger problems together, instead of isolating us even further.

*

A year after my diagnosis, I sat in a Montreal-area hospital, clad in a medical gown and socks, clutching a small piece of yellow paper. I didn’t feel like I had all the information I needed to make a decision about whether to have the LEEP, so I had scribbled down a list of questions for my doctor.

But I was called into the OR with no chance to speak to the doctor beforehand. Instead, I was ushered onto the operating table. As he applied local anesthetic to my cervix and inserted the wire into my vaginal canal, I asked him: “So… should I be worried about any sexual side effects?”

“No, no, I have never heard of this,” he replied.

With the loop still inside me, he rattled off what to expect post-surgery. In a daze, I heard the words “heavy bleeding.” “So a lot of bleeding afterwards is normal?” I asked. “No! Go to the ER if you start bleeding,” he repeated.

The whole thing was over in a matter of minutes. I stumbled off, the yellow paper crumpled and unused.

For a long time after the procedure, I felt confused and irritated at myself for not being a better self-advocate. I could have refused to undergo the procedure if I wasn’t satisfied with the level of information I had been provided. Why hadn’t I been able to say what was on my mind?

Sharing my story helped, because I started to realize just how common LEEPs were. It helped assuage my fears that I was necessarily on the road to cervical cancer. Reading accounts like those from Lindeman, who experiences doctor anxiety after a lifetime of poor medical encounters, helped reassure me that I wasn’t alone.

Is sharing stories online enough to take control of our health? In some ways, yes. The Internet has become a lifeline for many Americans seeking medication abortions. Lindeman says journalists pay attention to what is being said online and amplify concerns to a wider audience.

Meanwhile, after finding that the majority of videos about IUDs on TikTok mentioned pain, Wu shifted the way she practices: “I [now] offer patients something for pain before any IUD placement and really before any gynecological procedure.” In 2024, the Centers for Disease Control and Prevention, the United States’ public health agency, even updated its recommendations for IUD insertions to include discussions of pain management.

And in 2023, a year after my own LEEP, a study in The Journal of Sexual Medicine was published exploring healthcare providers’ limited knowledge of post-LEEP sexual dysfunction and the resources patients used to cope—potentially the first ever study to look at the difference in patient and health-care provider perspectives when it comes to LEEP treatment. It found that there was “misalignment” between the two and recommended not only further research into sexual dysfunction symptoms, but also better education and training for providers, and better support for patients who do have negative outcomes.

These are heartening indications that when you share your health experiences, people are listening. The question remains: how do we translate these types of discussions into improving health outcomes for all AFAB people—especially when research into health problems that affect us is still underfunded?

It starts with finding ways to pair networked knowledge with collective action, because the power of social media is ultimately limited. “It’s the personalization of systemic problems,” points out Lindeman. “[You’re] continuing to focus on what you can do as an individual, instead of attacking the systems that are responsible for such a deficit in care.”

Social media may give us the reassuring impression of solidarity. In reality, it is atomizing, incentivizing a competitive attention economy; a billion voices speaking over, but not always to, one another. The collectives of the women’s health movement knew that to build power, you must do it together, through communities of care.

Perhaps we have to start by relearning that lesson–even if it means tearing ourselves away from our phones.

“I want to know who you are, where you’re from and why you’re HERE.” His gaze swept to the opposite side of the room where a doll-like actress with the weightless confidence of a foam roller was already mid-sentence.

I’m from New Jersey. I’m here because when I was nine… Suddenly, her image doubled. I felt panicked. Sweat soaked my vintage red Lacoste sweater. My heart grew wings, my skin sprouted feet and as it crawled, my colon began evacuating. I was too high to be in movement class. I should not have started my day by combining two cups of green tea with five Xenadrine-EFX, a diet pill concentrated with synephrine and caffeine which I remember as chunky, purple, and star-shaped, but I didn’t yet know that.

*

That year, 2006, marked two years since the U.S. Food and Drug Administration’s (FDA) shocking ban on ephedra—controversial amphetamine-esque compound and infamous darling of the 1990s weight loss industry. Ephedra contains ephedrine, a stimulant that imitates our fight-or-flight response, thereby triggering adrenaline. It’s also called ma huang, and is one of traditional Chinese medicine’s 5,000-year-old treatments for respiratory conditions. It holds a solid reputation for doing that job, though at much lower doses than what was later used in natural health products (NHPs).

NHPs gained popularity in the 1970s. Toxic pressure to be thin has been a predominant part of North American culture since at least the 1920s, but in Canada, it intensified in 1953 with the first Canadian weight-height survey, intended to trace the shape of Canadian body mass. From there, public health focused on discouraging personal habits that could lead to non-communicable diseases—inactivity, smoking, alcohol consumption. Body-size panic emerged in the 1970s in the U.S., too. By the 1990s, fatphobia became a moral panic. The World Health Organization labeled fatness an “epidemic,” media warned larger individuals to beware of certain oncoming death and the words “fat-free” convinced even my mother that trends like the Cabbage Soup Diet were totally healthy. Food became the enemy, and nutritional supplements rose as an obvious solution to the supposed problems of our bodies.

The issue with supplements, however, was that they weren’t stringently regulated. In the U.S., NHPs like ephedra were legally protected by the 1994 U.S. Dietary Supplement Health and Education Act (DSHEA) which stated that, unlike pharmaceuticals, NHPs were freed from testing. Companies were not required to state the risks around their products nor prove their benefits. The same products were approved in Canada, where NHP regulation didn’t exist under any act. In both countries, the burden of proof was on consumers. As long as no one got verifiably hurt, companies could sell their fat-burning potions.

By 2002, ephedra manufacturers were selling $1.3 billion in ephedra- containing products per year. Manufacturers would reportedly produce one-month’s supply for as little as $4 and sell the bottle at health stores for $40. The Ephedra Education Council, a PR group comprised of industry representatives, maintained that 15 million consumers took the herb annually. Meanwhile, over 2,200 complaints regarding cardiac-related side effects, including stroke and death, filed into the FDA. Ephedra accounted for 64 percent of all adverse reactions to herbs reported to U.S. poison control centres. Still, the FDA required more proof before they could take action.

Proof came in February 2003. Steve Bechler, a 23-year-old pitcher for the Baltimore Orioles, collapsed during spring training and died of complications relating to heatstroke less than 24 hours later. Bechler had been taking three ephedra-based diet pills per day. Toxicology reports confirmed high levels of it in his system. His death was one of several ephedra- related deaths in professional sports that had taken place since 2001.

In December 2003, the Bush administration announced a ban on ephedra. Manufacturers received letters demanding that they halt production of ephedra-related products, though they had already been in the news for 10 months and sales had sunk. But people’s desire to lose weight with the help of a pill hadn’t. There was already a new unregulated option out there, which the diet pill industry quickly latched onto: synephrine.

*

I first laid eyes on Xenadrine-EFX when I was 17 years old, but I had been dieting since middle school. When I was 11, I tried my best to starve myself throughout the day. After school, I’d sit and binge-eat the contents of our kitchen cupboards.

I was a naturally lonely and panicked kid. I didn’t know it at the time, but I was going blind, and vision loss was affecting my sense of safety. Large blindspots fragmented my visual fields which were then filtered by constant blinking lights, as if I lived behind a broken TV screen. My eye doctor’s advice was to “relax.” In the meantime, I had an impossible time connecting with other kids or even with my own family.

My family was fragmented in its own right. My mom dealt with a mental illness which at times restricted her availability. My dad was often out of town, working. After school, food became a reliable friend. I spent hours unsupervised, watching TV, munching my dad’s neglected snacks. I hid Twizzlers and Twix wrappers in my room until I could sneak them to a public garbage can. In the evenings, I planned new remedies to undo the effects of my snacking—laxatives, restriction diets, intense cardio. I quickly discovered that I loved running. It was the one health initiative that felt like a safe escape from anxiety. As I ran, I could picture myself gracefully racing among other athletes, but I was too embarrassed of my body to ask if I could compete or train.

No one put me on a diet. I somehow just learned that I was “too big” through some kind of cultural osmosis. Maybe it was because I was curvy and didn’t fit into clothing at the mall. I felt awkward and I equated awkward to ugly, ugly to large, large to loser. One of the most insidious errors in the late twentieth-century zeitgeist is the unscientific assumption that large bodies are a clear and identifiable problem. If that pressure hadn’t existed, I would never have swallowed a diet pill. But it did exist, and when I was admitted into SU, I planned a total makeover. I was working as a tutor earning between $80-100 per week. I took my savings to the mall. Nothing fit me.

As I was leaving, I passed Nutrition House. The windows were plastered in glossy images of regular people, displaying their BEFORE—tired, desperate, bloated, ancient—and their AFTER—glowing, wide-eyed and somehow much younger. It was clear to me that I was the BEFORE. The AFTER was calling me.

Cytodyne Technologies, the makers of what was soon to become my drug of choice, Xenadrine-EFX, were the masters of the diet pill ads. “Our incredibly advanced thermogenic formula literally “revs up” your body’s metabolism for rapid reductions in body fat and an incredible boost to your energy levels…John Murphy lost 37 lbs in just weeks!”

BEFORE—Dark, low-contrast image of a sad John Murphy with a belly.

AFTER—John Murphy as Superman. Stories are soothing because they permit escape. Words like thermogenic or any of the listed active ingredients in the product, such as synephrine and caffeine, were safe enough for John Murphy. That meant they were safe enough for me.

The cashier silently took my cash.

Outside the store, I took two tasteless capsules (in retrospect, disappointingly not star-shaped after all), as directed on the bottle. After an hour-long trip home, my face tingled.

*

When I arrived at Syracuse in September, I was taking five to six pills every hour, which contained the equivalent of about 3.5 cups of coffee, chased with plenty of green tea. I barely lost any weight, but I gained confidence, like I’d jumped into a sparkling future where everybody loved me. But, if time could be manipulated that easily, we wouldn’t need drugs.

I felt unreal on that first day as my classmates introduced themselves, and not in a good way. Hi, I’m from Wisconsin and I applied because my dad thought…I tuned out. The movement studio was melting. When I tuned back in, the next voice I heard came from right in front of me: I’m from New York and I’m here because I NEED to be here.

The New Yorker triggered my deepest fear. I didn’t belong there. If anything, I belonged in a hospital. My heart spanked my ribcage. I realized from the silence that it was my turn to speak. “My name is Rachel. I’m from Toronto and I just.” I swallowed hot gas, afraid this might be my dying statement. “I just want everyone to be my friend.” My head nodded forward, I gasped for air. Sudden laughter boomed around me.

When class finally ended, my dream had come true. Everyone wanted to be my friend. But I didn’t know what was happening, couldn’t separate reality from fiction. I ran away and straight through the building until I found my faculty advisor, Craig.

“Hello.” Craig looked at me like I was on fire. He was the teacher who’d auditioned me for the program but he didn’t recognize me. “What’s going on with you?”

“My name is Rachel Ganz and I’m an acting student and I shouldn’t have come here and I don’t want to stay here and I’m so sorry.”

Craig watched me sob.

“Look,” He waited for me to look at him. “I think you should stay. I can tell you have a lot—” he moved his hand to his chest and gestured outwards— “in you.”

I nodded my head many times, thanked him, and ran through campus to the back of my dorm to throw my freezer bag full of Xenadrine-EFX into the dumpster.

The next morning, throbbing pain radiated throughout my entire body.

At the time, I didn’t know very much about the effects of synephrine. However, as a stimulant, when combined with caffeine, it became the upper I felt I was missing. It seems possible that I’d developed a dependence on the pills, especially considering that when I stopped I had no appetite, no energy and no will to live.

After I stopped taking the supplement, I lost twenty pounds in less than a month. My mom came to visit and was disturbed by my new appearance; she said I looked sick. But I loved the way I looked. I began smoking to mitigate symptoms of withdrawal.

When my appetite returned over two months later, I went to the meal hall and ate a muffin. Then I ate another, then a third. I could not stop eating and my mood sank even deeper. I dropped most of my classes and waited, mostly in bed, for some kind of ending. I surfed pro-ana web forums, studied starvation tips and experimented with bulimia. My attitude needed an overhaul.But I was only 18 and severely depressed. Luckily, my roommate was also an acting student. She woke me up and walked me to class every morning. Without her, I don’t think I would have moved.

*

Sometimes, and from certain vantage points, it seems like we’re in a new era when it comes to our conceptions of bodies. Body positive celebrities are embracing themselves as they are naturally, and a quick scroll through TikTok and Instagram will reveal strong body positive, or at least neutral, communities. But other times, it seems like all that’s changed is the framing. While I faced the pressure to be thin at the mall, today we feel it in our beds, in our cars, on the toilet.

Robert Chinery Jr., Tracey Chinery and one of their companies, RTC Research & Development, LLC, the marketers of Xenadrine-EFX, were charged in 2005 with false advertising. They were fined $8 million in consumer redress.

Today, low dosages of synephrine and ephedra are still approved by Health Canada for use as natural health products. They’re sold in supplement stores, branded as decongestants by companies such as 4EverFit (Ephedra) and Synephrine 30. However, the combination of synephrine and caffeine is banned under Canadian law.

That doesn’t mean one can’t still access federally approved drugs that can make people smaller. A new kind of diet drug has emerged as a trend. Most famously, Ozempic, generically known as semaglutide and intended as a medicine to treat diabetes, has been popularized by the media as a “treatment” for living in a large body. As a result, it’s becoming harder for many to avoid the pressure to be thin.

Semaglutide was approved by the FDA in 2017. In some respects, its success is revolutionary. It works by mimicking GLP-1, a hormone that we produce in our gut. “After you eat food, the hormone goes from your gut to your pancreas to release insulin and to allow the insulin to store that food for later on,” explains Dr. Sean Wharton, who specializes in diabetes and weight loss and runs a clinic in Burlington, Ontario. “It also tells the brain that you’ve eaten food and to stop eating.” People living with type 2 diabetes often do not have enough GLP-1. Drugs that mimic GLP-1 are an immediate game-changer for them, but also for many people who want to lose weight.

Previously, bariatric surgery was the only available treatment for people who wanted or needed to lose a lot of weight quickly. Over a longer period of time, psychological interventions such as cognitive behavioural therapy (CBT) have been shown to be useful, too. But, CBT is a privileged approach that’s often only available to people with time, money and stable lives. Medications such as semaglutide, in theory, can offer immediate intervention for people who want to lose weight who are also surviving complex, destabilizing pressures such as poverty, violence or racism.

Barriers to semaglutides include their cost, which is about $200 to $300 per month in Canada, or the fact that they are currently mostly injectables, which can be difficult to produce, store and ship. Also, at the time of publication, Ozempic has not been approved by Health Canada as a weight loss drug, though the agency acknowledges it may be prescribed “off-label,” meaning for a purpose other than that for which it’s approved. For those with type 2 diabetes, costs may be covered by provincial drug plans or private insurance plans, but it’s not a guarantee. Side effects are an issue, too: Ozempic’s include diarrhea, constipation, nausea, vomiting, and abdominal pain. The drug can also cause gallbladder and kidney problems, pancreatitis and low blood sugar. Thyroid tumours are another potential side effect.

Still, these side effects aren’t warning people off the drug. This matters for another reason: people who hop on board celebrities’ and influencers’ endorsements of Ozempic as a weight loss tool could adversely affect the health of people with diabetes by causing shortages of the drug through their demand. That’s been happening globally at various points for the past year. The drug’s manufacturer, Novo Nordisk, announced in August that shortages are expected in Canada into October. There was a shortage here for a week in March, which was corrected after doctors reigned in prescriptions to Americans (in the U.S. the drug was largely unavailable, and can cost over $900 per month). In January and February, nearly one in five Ozempic prescriptions filled in B.C. was for an American. Over 30, 000 prescriptions for the drug were issued to Americans between Jan. 1 and April 19. In April, the province announced that non-residents will no longer be able to get Ozempic through mail-order or online. Americans can still buy Ozempic in Canada, but they have to do it in person. It was found by provincial health authorities that one Nova Scotia doctor, currently based in the U.S., was allegedly responsible for writing more than 17, 000 prescriptions over a period of a few months, and two online pharmacies in B.C. had filled most of them. That person’s licence has now been temporarily suspended.

It’s clear from this craze, and the boom in other semaglutide-based drugs like Rybelsus, a pill, and Wegovy, an injection approved for weight loss in Canada but not yet available here, that Ozempic is only the beginning.

As the drugs become more popular, though, the eating disorder treatment community expresses concern. “The temptation for people who are in larger bodies to take medication [like Ozempic] is really strong,” says Dr. Karen Trollope-Kumar, family physician and co-founder of Body Brave, a charity offering online eating disorder treatment and support services. Trollope-Kumar worries about adding to the “internalized stigma” of larger-bodied people and says the onslaught of self-blame may provoke disordered eating.

The rise in GLP-1 receptor agonists has strengthened the discussion of obesity as a disease, a stance that has been critiqued by fat activists, racialized people, and medical professionals. Obesity is determined by one’s body mass index, or BMI, which measures body fat based on height and weight. A person with a score of 30 or over is deemed to be obese. But pathologizing larger bodies and problematizing them doesn’t help people and can lead to disregard for people’s true health concerns. Further, BMI was created almost 200 years ago by a non-doctor who measured white bodies and created standards from those measurements. Today, it has been debunked by many as a largely unscientific, racist tool.

Trollope-Kumar’s approach is to think about health from a broader perspective and to prioritize social connections as a means of staying healthy. “If we feel socially connected to other people,” she says, “that’s actually the most protective factor for our health, not weight.”

*

I used to think weight loss would lead me to social connection. My sense of isolation has intensified as I’ve aged, possibly hitting its peak in 2018 when I was diagnosed with retinitis pigmentosa, a genetic retinal disease which causes vision loss. Scared to lose all of my vision, I quit hobbies that felt dangerous or embarrassing, including fitness and running. Instead of participating, I sat alone and scrolled through fitness influencer content on Instagram, eating candy and gazing into the AFTER—transformed women with rippling muscles, long straight hair and impossible joy.

Later, when pandemic restrictions had come and then eased off again, my partner and I moved to Leslieville, a neighbourhood in Toronto’s east- end with large parks that’s close to waterfront trails. The long paved paths were populated with happy, healthy runners of all shapes, sizes and colours. They reminded me of the teenage treadmill escapes I used to take every morning and I wanted to join them.

But, I was afraid to be a blind runner. It wasn’t the AFTER I imagined. To conquer my fear, I began running with my dog. After a month, I ventured for longer runs, alone. I started signing up for races which introduced me to a long-sought-after community.

This past May, I ran my first marathon. By the 30th kilometre, I hit a wall and wasn’t sure if I was going to finish. But then, I noticed other people around me were also struggling. I followed a woman. She followed another guy. We became a small group, loosely connected by our will to keep going. We shared a rhythm and an experience, trotting in our bodies of all sizes, through the beautiful AFTER.

Photo by Gilaxia

One brisk November 1938 afternoon in Basel, Switzerland, chemist Albert Hofmann successfully synthesized lysergic acid diethylamide for the first time. The compound was set aside and forgotten for five years until Hofmann resynthesized it, accidentally absorbed some, and took the world’s first acid trip.

The discovery of acid, or LSD, changed the course of social history. Hofmann’s employer, Sandoz Laboratories, began selling it as a psychiatric panacea in 1947, hailing it as a cure for everything from alcoholism to schizophrenia to criminal behaviours and “sexual perversions.” Curious journalists warmly welcomed the new drug in their reporting.

The ’50s welcomed a new era of psychedelic research for a variety of ailments. Newspaper and magazine headlines were positive, mirroring the science world’s excitement around the newfound LSD. “Can This Drug Enlarge Man’s Mind?,” asked Gerald Heard in Horizon magazine in May 1963. He decided that it could. In November, Cosmopolitan ran a piece calling it “Hollywood’s Status Symbol Drug.”

This pro-psychedelic narrative didn’t last long, however, with some states banning sale and possession and concerned parents and citizens getting involved. It is here that we begin to see the media changing their perspectives on LSD and other psychedelic drugs, reporting on both the changing legal landscape and on shifting public opinion. “Stronger Curbs on LSD Proposed: Medical Society Committee Says Hallucination Drug is ‘Most Dangerous,’” read a headline in The New York Times on March 30, 1966. “Is the Trip Over for LSD?” asked Business Week on April 22. It was close: the psychedelic ’60s were entering the beginning of their end.

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Mass media and the public are deeply, closely intertwined, with the media taking on the role of distillers, taking information straight from the source and providing it to the public in an easily digestible way. Beginning in the 1950s, mass media including newspapers and TV were the primary source of information to the public, and thus, the most important catalyst for moulding public opinion. On one hand, in the ’60s, the media was simply reporting on what some people already seemed to want to believe – that LSD and other psychedelic drugs could be dangerous. On the other, the media also played a role in shaping public opinion around these drugs and their potential dangers, and in creating the worries, often false, around them to begin with.

In 1968, possession of LSD became illegal in the U.S. After a June 17, 1971 press conference with then-U.S. president Richard Nixon, the term “war on drugs” became popularized with the media’s help. Editors quickly pivoted to publishing fear-mongering stories of addicts roaming the streets, exaggerated drug abuse statistics, and polarizing, racist takes. Usually, it was Black and other racialized people accused of being drug addicts and criminals and who made up the majority of American prison populations. By 1996, Black men were sent to prison for minor drug offences 13 times more often than white men.

Following this legal shift, drug reporting between the ’70s and ’90s skewed negative. “A New Generation Discovers LSD, and Its Dangers,” said The New York Times in December 1991. Between that headline and today, The New York Times has changed its tune. This same publication now shares dozens of stories on the so-called psychedelic renaissance. In the last few years, they’ve published pieces with a more curious tone: “What Does Good Psychedelic Therapy Look Like?” Dana G. Smith wondered this year.

In many ways, the media is responsible for shepherding the new era of acceptance we’re entering now. I think the modern-day psychedelic renaissance started around 2010 when The New York Times published “Hallucinogens Have Doctors Tuning In Again,” a dive into cancer patients’ experiments with psilocybin to face terminal diagnoses. Although certainly not the first (Wired published a piece on tech boys loving acid in in 2006, “LSD: The Geek’s Wonder Drug?”), a legacy publication sharing something so different from the public’s traditional understanding of medicine and healing, and from their previous stance, was radical. Since then, we’ve seen a noticeable increase in the media promotion of psychedelics.

But while journalists’ work functions as a cultural mirror, sometimes reflecting current public opinion back to the public, journalists, as the frontline workers in the information economy, need to look past existing trends and popular thought to report a more complete, and sometimes critical or unpleasant, truth.

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Today, psychedelics are celebrated as a new healing cure, a way to get multiple years of therapy in one trip, and a way to treat anything and everything from depression to eating disorders to migraines. Media coverage is, for the most part, overwhelmingly positive. It seems the miracles of psychedelics don’t ever end. Celebrities are coming out as psychedelic supporters, donating millions to the cause of psychedelic therapy, and sharing their stories, whether healing or hilarious. Aaron Rodgers credits psychedelics with making him a better football player. Jaden Smith claims they made him more empathetic. Both were speakers at the Multidisciplinary Association for Psychedelic Studies’s (MAPS) June 2023 Psychedelic Science conference in Denver, which drew over 11,000 attendees. Contrary to the headlines of the ’70s and ’80s, headlines today don’t often mention that psychedelics may not work as intended and that there are plenty of harms and risks involved.

“[T]here’s so much misinformation being peddled, it’s leading people to not get the help that they need. And a big part of that misinformation is this notion that psychedelics are somehow a magic bullet, where you can go and have an experience and it’s going to fix things in you,” says author and psychedelic therapy advocate Shannon Duncan, who believes that the media needs to be more transparent in psychedelic reporting.

The top few results for a search on psilocybin therapy are articles preaching the power of magic mushrooms: “How psilocybin, the psychedelic in mushrooms, may rewire the brain to ease depression, anxiety and more,” reports CNN. Almost no articles show up discussing the risks involved and how to figure out if they’re a good fit.

The dangers of talking about psychedelics through a majorly positive, healing lens lie in what’s being omitted. In this regard, the responsibility of psychedelic reporters is huge, says Amanda Siebert, psychedelic and cannabis journalist and author. The main problem, she says, lies in exaggerated media and lack of media literacy. “People are not reading the entire thing. They’re skimming. They’re seeing ‘oh, this person did psychedelics and it cured their depression.’ I think the problem with that is it perpetuates this idea that psychedelics are a panacea.”

“I do ultimately think the onus is on the user,” says Dr. Erica Zelfand, a physician specializing in psychedelics and lead instructor at Oregon’s InnerTrek psychedelic facilitator training school. “It’s your body, it’s your consciousness, that’s your call.” The media’s job in this, she says, is to help people decide the right choice for them. She says journalists could be doing a better job of delivering accurate, nuanced data.

Dr. Dave Rabin, co-founder of Apollo Neuroscience, thinks media professionals aren’t doing enough work to find the right sources. He says many articles about psychedelic medicine cite experts who don’t practice it, or who aren’t involved in clinical research, which can sometimes lead to articles overstating the risks, backed up by people who don’t know enough to make those claims. He adds that too often, the therapy part of psychedelic therapy is pushed aside and not talked about nearly as much as the psychedelic part, which leaves an incomplete picture of how treatment works.

Acupuncturist, primary care provider, and psychedelic therapy advocate Dr. Jonathan Fields also says the media is missing out on key parts of the psychedelic therapy journey. “[The media is] kind of talking about everything except the most important thing, which is actually the fact that it works because it’s allowing you to change your mindset,” he says. A key to the therapy is integration: psilocybin can help people integrate useful tools learned through therapy, or help people stick to regular exercise. “Rather than just like, ‘I took mushrooms. I feel great.’”

Dr. Evan Lewis, vice president of psychedelic neurology at Numinus, a Canadian company with a series of clinics focusing on psychedelic therapy, says that the media and, by default, readers and other people, just “don’t understand the importance of having a really good therapist.” He says that what remains underreported is the whole framework around good preparation, guidance and integration.

On the note of media literacy, Siebert says, the issue is that “a lot of people don’t understand the relationship that PR plays.” This puts the publications at fault, too: Paid content isn’t being clearly disclosed in the psychedelic space, and neither is the “press release regurgitation” that Siebert says sometimes happens, automatically pivoting the “article” toward positive coverage. These things are not inherently bad—they just aren’t transparent.

Promoting almost exclusively positive news and information about psychedelics can be dangerous. Today’s news cycle is more than 24 hours—it’s deeper. The internet creates echo chambers and vacuums. Two people could have differing thoughts and both, after a Google search, could come back with apparent facts to back themselves up. Gen Z gets more of their information from TikTok rather than Google, and TikTok is full of diluted, or even totally wrong, information.

While we as reporters can’t control what someone is consuming on social media, we can control the messaging that we share and propagate on our own platforms and in our articles. We are not just writing about psychedelics for the sake of writing about psychedelics.

Image courtesy of Dopamine Montréal.

A pride flag flaps defiantly in the wind above a welcoming front porch. A basket of free naloxone kits hangs on the front door. On the wall upstairs, a poster reads “Activities to avoid dying sad/to make you happy” and lists acupuncture, bowling, and picnics.

This is the home of Dopamine Montréal. Just like its namesake, Dopamine uptakes and releases a rush of essential resources to those who use illicit drugs. But the organization operates under the spectre of the law: Clients, many of whom are low-income or houseless, struggle to access employment, housing, and security as long as drug use is criminalized.

Montreal is considered a progressive urban centre, located in a province with relatively strong social services like universal daycare and subsidized college programs. When it comes to tackling the overdose crisis, though, the city is in traction. According to the Public Health Agency of Canada, 541 people died from an opioid-related drug overdose in Quebec in 2022, an increase of nearly 20 percent from the year before. Emergency interventions in the city of Montreal were reportedly four times as frequent in 2022 as they were before the pandemic. These numbers paint an incomplete picture, however. CACTUS Montréal, another harm reduction organization that serves the Gay Village, recorded a 350 percent increase in overdose deaths in the city from 2019 to 2022—about one per day. According to their numbers, as of this January, the rate has jumped to two per day.

Harm reduction groups such as Dopamine and CACTUS are filling the gaps in community care. Established in 1994 amid the HIV/AIDS crisis, Dopamine serves the Hochelaga- Maisonneuve neighbourhood through a day centre located in a converted home and a supervised injection site (SIS) a few streets over that operates from 8 p.m. to 1 a.m. After what CACTUS says was a decade-long bureaucratic process involving loads of paperwork and city approval, the SIS opened in 2017 alongside CACTUS Montréal’s.

Dopamine was founded on three core values: humanism, accessibility, and solidarity. The words reinforce that Dopamine is part of a political struggle against the conditions that create poverty and lead to people being incarcerated for drug-related crimes.

Executive director Martin Pagé knows how the cycle works; he’s seen it firsthand through his personal experience and through Dopamine’s staff, several of whom used or continue to use their services. “We are par et pour,” he says, both by and for the community. Criminalizing drugs pushes the market underground, where products are cut with riskier substances, such as often-deadly fentanyl or carfentanil, at variable concentrations. Once someone’s drug use is made legible through a criminal record, barriers to housing and employment get even taller. “It’s the exact opposite of what they should be doing,” Pagé says. Without safe, controlled injection sites that provide sterile tools, the risk of contracting HIV or Hepatitis C grows significantly.

At Dopamine, academic experience and lived experience are both valued and essential to fostering trust with clients. Intervention coordinator Yanick Paradis has worked at Dopamine for 18 years, with 12 years of street work experience. Many staff and casual employees are users themselves, Paradis explains. “We involve the people who visit the organization at different levels,” he says. “We will compensate people for their work, no matter what kind, whether it’s lawn mowing or a service offer…Ideally, our group is led by the community.”

As the organization has a history rooted in the AIDS epidemic, an integral part of their community mandate is to make health services accessible. Dopamine runs a drop-in medical clinic every Tuesday for their regular clients. Though it’s not a totally effective alternative to Quebec’s crumbling health-care infrastructure, the clinic focuses on preventive care and follow-ups for those who face barriers to access. “We reflected on how we could bring community health closer, and have health care that gives people positive experiences,” Pagé explains.

Pagé says the pandemic exacerbated every problem the community group sees. Clients are in increasingly precarious housing situations; the social safety net is eroding and organizations like theirs represent the last threads. And sex workers, immigrants, and trans people all find themselves at the intersection of socioeconomic instability and government negligence.

As paramedics administered naloxone a record high of 291 times in the city in 2022, according to Radio-Canada, drug testing has become one of the most crucial services Dopamine and CACTUS have to offer. Data gathered by CACTUS reports that Montreal’s Gay Village is at the epicentre of the overdose crisis in Quebec. But municipal and provincial governments are not treating it that way, though there’s precedent to do better. British Columbia was granted a federal exemption to decriminalize possession of illicit substances weighing less than 2.5 grams in January of this year, while the city of Toronto began the process of applying for the same exemption in 2021. Long-progressive Edmonton, often subject to Alberta’s conservative political lean despite its ability to operate separately, tabled a motion to decriminalize drugs within the city. Over 100 harm reduction groups across the country support the Canadian Drug Policy Coalition’s proposal to make all drugs legal for personal use nationwide— but fierce opposition from some premiers, municipal governments and lobbyist groups makes it unlikely to move forward.

In the summer of 2022, Mayor Valérie Plante told the CBC that she supported the idea of decriminalization in Montreal. Her administration has yet to apply for the same exemption.

The municipal government’s vague response illustrates just how easy it is to shirk responsibility for a manufactured crisis. “We are actually in a worse situation than we were [in] the HIV pandemic,” says Jean-François Mary, CACTUS’s executive director. “Because actually, in those days, there was a real partnership between public health and community organizations.” In the 1990s, a Quebec coalition representing 31 community organizations gave presentations to a federal committee to advocate for increased funding and support. Now, Mary says that public health officials are detached from the reality of intervention on the ground, hindering their approach to resource allocation.

“They talk, we die,” is the slogan CACTUS and Dopamine jointly rallied behind at a protest in early April. They are pushing for decriminalization, increased funding from Quebec’s public health division, and a non-prohibitive approach to the overdose crisis. “And Valérie Plante is talking,” says Mary. “But what are they doing? What have they done?”

CACTUS provided the municipal government with the paperwork to apply for the exemption, according to Mary. In an email to This, the city’s media relations office referred to a non-partisan motion adopted by city councillors in 2021, asserting that they were in favour of decriminalizing simple possession and calling on the city to apply for the exemption. But they did not confirm that an application was in the works. They did say the “[police] will continue to apply the law.”

People working on the ground know that prohibition won’t help those already pushed to the margins. “An important saying in harm reduction is if you can’t help, then at least try to do no harm,” Pagé says. Whether Montreal’s policymakers will heed this duty of care remains to be seen.

James Vlahos can no longer sit across from his father, hold his hand or give him a hug. But he can ask him for advice when he’s feeling blue and let his children ask questions about his family’s life in Greece or listen to him sing “Me and My Shadow.”

When his father, John James Vlahos, was diagnosed with advanced lung cancer, at the age of 80, James began racing to record his life stories. For months, he sat across from his dad with an audio recorder, asking questions and recording long answers and jokes he’d heard “a hundred times.” In the end, he recorded 91,970 words.

What began as an oral-history project quickly evolved into a quest to give his dad virtual immortality. Vlahos, a journalist and author, had long been interested in Artificial Intelligence (AI) and voice applications. Shortly after his father’s cancer diagnosis, he learned the company PullString was releasing a software that would allow the public to create what are called conversational agents—like messenger chatbots. He wondered: What if he took the thousands of words and audio clips he’d collected and built a virtual replica—a Facebook Messenger chatbot—of his dad, with whom he could converse?

With his father’s and family’s blessings, Vlahos began building the Dadbot. His parents had never interacted with a chatbot before, but they liked the idea of being able to pass on his father’s stories in an interactive way.

“He had a way of sassing people in the friendliest kind of way, like if he thought you were getting a little too high on your horse, he had sayings like, ‘well, hot dribbling spit!’” Vlahos says. “I love hearing those words but I like when they come out at a surprising time. That is one thing I am proud of with the programming—that I got him.”

The Dadbot is designed to respond to questions driven by the people interacting with it, such as “What was your favourite class in college?” And every so often, the bot will decide to tell a story or joke.

Vlahos says building the Dadbot was part of his grieving process, and he still enjoys interacting with the bot.

“It’s comforting for me to talk to the Dadbot…It was neat to kind of step through his life, chapter by chapter, but then also to step into his mind, to a degree. How would he respond if somebody sort of teased him in this sort of situation?”

Digital avatars of the deceased are a rising trend, and go by different names, such as memorial bots or griefbots. When Vlahos detailed his experiences in a 2017 article for Wired magazine, he unintentionally positioned himself as a leader in this virtual immortality space.

“A lot of people wanted to talk about it,” he says. “One man, he was dying, and he wanted to create something for his kids to have, another woman had lost her son in an automobile accident and she wanted something to help remember him. It really resonated with people in a way that no project that I’ve been involved with before has.”

THE QUEST FOR IMMORTALITY IS nothing new but the ways we live and die have changed dramatically. In the 2018 version of the Vanier Institute report, Family Perspectives: Death and Dying in Canada, the first desire listed is “We want to live forever.” As the report points out, contemporary Canadian culture is death defying and death denying. We seek out anti-aging products and praise those who make it to the senior years with youthful lifestyles still blazing.

In Canada, sudden deaths are rare—the majority of Canadians get a heads-up that they, or their loved one, is dying. But in general, we are living longer than ever before. According to the 2016 census, the fastest-growing age group in Canada is actually “centenarians,” those aged 100 or older. The number of Canadians aged 85 and older now represents 2.2 percent of the total population (Japan, the country with the highest, is at just 4 percent).

Could this culmination of longer lives and deaths be making us think more about our personal legacies? Could it be driving our desire to achieve immortality in the most likely way we can—in the virtual world?

ANDREW LOUIS, A TORONTO computer scientist, has accumulated a lot of data. As a Millennial and tech entrepreneur, you’d expect his digital footprint to be large but it’s Louis’ personal archiving project, “Building a Memex,” that takes it to the next level.

For more than 15 years, Louis has programmed the devices in his life to track, record and store his digital footprint, resulting in a massive database that includes everything from what he’s typed and tweeted to the websites he’s browsed and what he’s eaten. He’s created a digital time capsule that can be searched, curated and, potentially, gifted to his children some day. In theory, someone could recreate a day in his life—or even recreate him.

“Pretty much every email or chat message I’ve ever sent is in there,” he says, joking that most of it “isn’t worth ever reading again.”

Last year, Louis decided to put his database to the test. He took the extensive MSN chat logs he’d saved as a teenager and resurrected his teenage self into a chatbot, using Recurrent Neural Networks (RNNs), a class of AI that creates vocabulary and speech recognition patterns. RNNs process all words in a text database, then develop a sequence or speech pattern based on those words.

This is no easy process. Chatbots require training to work and can require months of tweaking and training to create ever more complex and original sentences. The more times they run through a database of conversations, the more words can be stored for future retrieval. It’s also not a flawless process. As Louis points out, “All your typos and autocorrects will come back to haunt you.”

After 10 training sessions, a conversational structure emerged but it was only after 100 training sessions that his teenage replica started to sound more human and was able to understand and ask basic questions. Louis demonstrated the chatbot during a conference in New York City last year.

“Hello, are you there?” types the real Louis.

“Ya,” replies his teenage replica.

“Do you know how to use words?” asks the real Louis.

“Ya.”

After more training sessions, the common “ya” responses became a series of “lol” answers, even when inappropriate. Louis explains that without extensive training, bots choose the safest and easiest routes.

“There’s no general, structured knowledge that a bot can rely on,” he added. “Stuff like short-term memory is really difficult so if I say ‘I’m feeling sad’ and then continue on with the conversation, there’s no way for the bot to remember and work it into a future chat.”

Louis had high hopes going into the experiment but came away feeling decades away from realistic, human-like interaction with bots.

“Even if we can get a chatbot that has really good conversations, I don’t think there’s enough history yet that a single person has typed into a computer to really make a replica of a person that sounds like them and has all the general knowledge,” he says. “My dataset would be a best-case scenario and it’s minuscule compared to the amount of data you would probably need to do this properly.”

He also points out that who we are and how we speak isn’t always best captured in our correspondence.

“If a bot is just being trained on things I’ve said, there’s a whole set of experiences that have never made their way into text messages,” he explains. “At some point, you’re going to be really disappointed or frustrated by something the bot doesn’t remember.”

SCI-FI MOVIES AND LITERATURE have long inspired real-life tech innovation. A 2013 episode of the Netflix series Black Mirror, titled “Be Right Back,” is often referenced in articles and debates about digital immortality. When character Martha loses her partner Ash in an accident, her friend signs her up for a service to turn his digital life into a bot. She quickly becomes dependent on virtual Ash, alienating herself from the real people in her life. But as she trains the bot version and upgrades her account to phone conversations with his voice, then a life-sized robot replica of him that lives alongside her, things become too real—and unrealistic. The more he fails to remember important details about their life or react in the exact way Ash would have, the more he disappoints her.

“You’re just a few ripples of you. There’s no history to you,” she tells the bot. “You’re just a performance of stuff that he performed without thinking, and it’s not enough.”

Several start-ups are experimenting with memorial bots. One of the more well-known companies, Eternime, touts itself as “an artificial intelligence platform that collects your thoughts, stories and memories and stores them forever into an intelligent digital avatar that looks and talks like you.” It’s still in private beta but the company says more than 40,000 users have signed up for access when it’s available. The current version tracks daily personal habits, social media interactions and even physical movements to create an automated biography and generate an AI avatar.

But with bots still far from feeling emotions, and replicating personalities, are we limited to building griefbots that are more reminiscent of bodies without souls?

For Vlahos, the Dadbot fulfilled his needs. He hadn’t hoped for a virtual copy of his dad, but rather a storytelling device to help serve up his voice and stories. But Vlahos had a lifetime of knowledge about his dad to draw from. Companies are only as good as the data their users contribute.

“Imagine being a company, and they have never met the person and they are trying to create something that captures the essence—that’s hard to do,” Vlahos says. “Despite what you might see in the movies, there’s no just ‘oh, we’ll dump all the emails and text messages into a computer program and the computer magically recreates the persona—that tech is not actually here yet. And even if it were, it would be a very distorted and incomplete replica of a person. Think of what you put in text messages—there’s a lot of ‘I’ll be home at six, can you pick up some milk?’”

Toronto grief counsellor Lysa Toye says it is important to keep in mind people present different facets of themselves in online environments, and some of them aren’t necessarily meant to be public.

“Depending on where information is culled from, it can be really problematic,” she says. “We have different identities that we share with different people in our lives, strategically sometimes. There are reasons why my romantic or sexual relationship is a different kind of relationship then the relationship I have with my kids, which is different from the ones I have with my friends or my parents. I don’t know how you navigate those different kinds of identities and self-states in one glommed-together version of a person.”

Dr. Hossein Rahnama envisions a future where we are not trying to replicate entire beings, but rather memorializing and “borrowing” parts of people’s identities—specifically, their knowledge. Rahnama is a professor at Ryerson University in Toronto and CEO of Flybits, a company that uses AI to create micro-personalized experiences.

His Augmented Eternity project is making waves in the digital identity space. He has spent the past few years researching what he calls “swappable identities” at the Massachusetts Institute of Technology (MIT). Rahnama and his team of computer scientists are working on ways to use digital tools to democratize and socialize philanthropy.

Rahnama thinks the future of digital immortality is in allowing people to preserve and gift specific parts of their identities, like an entire body of professional knowledge, in the form of a digital avatar—or some other digital representation—that can be activated and accessed by communities. Similar to how chatbots create vocabulary and learn to interact by drawing on massive databases of previous text conversations, Augmented Eternity could mine someone’s body of knowledge and then create patterns and predict what advice they would give. Instead of paying a human big bucks for their expertise, someone could activate their digital avatar for free or a low cost. This could help people in sectors where knowledge is pattern-based, like medicine or law, ensure their professional legacies outlive them.

“When we started this project about three years ago, the first use cases we were hearing from our focus groups were very much around ‘I want to stay in touch with my loved ones, I want to leverage their expertise and I want to remember them,’” he says. “As we continued, one thing we noticed was there’s a philanthropist in every single individual. Everyone wants to leave a legacy behind, but based on the physical world and what we have seen so far, philanthropy is very limited for certain groups of people, based on their wealth or their ability.”

Rahnama believes society is tracking toward a more decentralized data economy, where our digital lives are not all stored by Google or Facebook, but housed in decentralized systems like the blockchain, allowing people to maintain more control over their digital footprints and decide how it’s used—or what it becomes—in life and the afterlife.

“[Millennials] are generating gigabytes of data on a very regular basis,” he says. “We said, what if we can allow them to own that data and turn that into an expertise? Let’s say after about 50 or 60 years worth of developing insights and gathering knowledge, they can now pass their expertise to a loved one or family member, and be able to kind of make their digital identity more sentient.”

But if we’re closer to being able to borrow someone’s identity and could turn their correspondence into a service or product, it raises the question: Can your identity or brainpower not just be borrowed, but stolen if in the wrong hands? Who owns your digital footprint when you die?

“That question is a very new question, even for the legal system. If you look at the terms and conditions that you find with Facebook, it’s very scary. They basically own all of your data, like whatever footprint you leave there is owned by them,” Rahnama says.

Ann Cavoukian is one of the world’s leading privacy experts and the former Information and Privacy Commissioner of Ontario. Cavoukian says she isn’t aware of any concrete ethical or legal guidelines around who can own and use your data after you die, and she has “been in this area a long time.”

“There’s a hope that the family members, etc. will honour the wishes of the individual, assuming that they had any wishes declared to their family relating to their personal information, but it’s really soft.”

And, she adds, “How do you ensure that the control you want or your expectations are met?”

For now, it seems the virtual afterlife remains as mysterious as the physical one.

IN THE WINTER OF 2018, like millions of others across the world, I ordered a DNA test. For $99, Ancestry.com promised me a look into my family roots, using just my saliva. The kit arrived in Toronto late last winter from Utah, Ancestry’s home base. I took the collection tube out of the package, spit all the way to the black line, then screwed on a blue cap to release a solution. I placed it in a plastic bag, activated my 15-digit code online, and off it went to be analyzed in Dublin.

But this wasn’t simply about tracing my geographical origins. It’s far more than that, a potential lifeline to a past hidden from view. You might say these are the halcyon days for DNA. Business is booming. Ask anyone you know—someone in your own extended family has likely spit in a tube as well. The Guardian recently pegged the global genealogy industry at $13 billion (CAD) by 2022; more than 10 million people through AncestryDNA alone have submitted their genetic signature. But every rose has its thorn, and as our desire to discover where we come from has blossomed, so too have concerns about privacy, marketing, the veracity of the science, and a host of unintended consequences. For one group, however, the risks are worth it.

A largely invisible community, adoptees and birth parents spread across the globe are subject to differing federal and provincial laws surrounding their legal rights. Their fight to find their families has found a new ally in science. For far too long, the secrets of prior generations have been deemed more important than the knowledge of our current one. This community remained in the dark about their origins until science changed the rules. Now, the past is being unearthed like ancient dinosaur fossils, and those secrets are rising up.

In 2017, I helped unveil the story behind my mom’s black market adoption in 1940s Montreal, all thanks to a consumer DNA kit. Forged birth records and closed adoption in Quebec meant thousands of children grew up with little information about their biological roots. The hazards of DNA testing were the least of their concerns; in fact, they were early adopters after searching fruitlessly for decades. This past year, story after story appeared in major news outlets with the same worrisome tone. It made me pause: Should the misgivings of a few unsatisfied customers outweigh the immense impact companies like 23andMe and Ancestry have had on my family, for example?

Without it, we’d still be stumbling in the darkness. Now, we’re close to solving a 70-year mystery, thanks in part to our belief that consumer DNA testing offers far more benefits than drawbacks—not just for us, but for the countless number of people linked to adoption who are still searching.

IN 1946, A JEWISH COUPLE from Edmonton adopted my mom in Montreal. They likely turned a blind eye to the nefarious Montreal underworld, where a sophisticated network of lawyers, doctors, and baby couriers ran a profitable postwar enterprise of selling “Jewish” babies procured from unwed and pregnant Catholic girls who were giving birth in unsanctioned homes throughout the city.

My mom was born in what is now a small bed-and-breakfast across from Mount Royal in Montreal’s Plateau. Her birth mother was likely given a small sum and asked to sign a false, Jewish-sounding name, legally absolving her of the child. Cross-religious adoption in Quebec was illegal at the time, and long waitlists helped foster an illegal marketplace. My grandparents paid $10,000 and registered my mom’s birth at a synagogue; a birth certificate arrived in Alberta months later, but any original biological information was absent. It remained an airtight scam until 1954, when two lawyers, Herman Buller and Louis Glazer, were arrested. Only a baby courier, Rachel Baker, saw limited jail time, and the Duplessis era that followed ushered in another shameful period in Canadian child welfare.

The bad actors involved couldn’t anticipate that, half a century later, those children would come looking for answers. After a decade of dead-ends and a newfound community who suspected they weren’t born Jewish, my mom readily swabbed her cheek in the early aughts with one of the first consumer DNA companies. While the matches were few, her haplogroup was distinctly Acadian.

DNA has proved nearly all of the children adopted by Jewish families during this era are French-Canadian or Acadian. Thanks to technological advances and larger genetic databases, two women I profiled have since found their biological family. One, Marilyn Cohen, whose name has been changed to protect her identity, is now in her early 70s. She spent four decades searching for her birth mother until she finally matched with a niece in 2016 using a consumer DNA package. Last summer she spent a weekend at a lake with two older half-siblings and her own family. “I was surprised how quickly I adapted to it,” Cohen says. She describes “muddled feelings” of an adoption that crossed political, religious, and provincial lines after growing up in Hamilton and Toronto. DNA offered her the only way to the truth. “People of my generation yearned for this for decades,” she says. She may be navigating a world where her brother wears a cross around his neck and speaks little English and she still sprinkles Yiddish-isms into the conversation, but she wouldn’t trade the experience for the world—they spent evenings sticking their tongues out at each other from across the dinner table. The tension and anxiety she carried for years vanished.

Erika Kawalek moved back to her hometown of Montreal from New York with her small family several years ago. Fuelled by curiosity surrounding the mystery of her mother’s black market origins and the desire for accountability, Kawalek and her mom submitted their DNA to several companies upon the suggestion of a “search angel” who recommended avoiding the provincial adoption agency. Kawalek matched with several cousins and thankfully, she says, those newfound (and non-Jewish) biological relatives have been extremely understanding about her blank biological slate.

Piecing together a tangled familial puzzle is no small task, and Kawalek and Cohen are not naïve to the concerns surrounding privacy. “It’s that element of the unknown,” Kawalek says. She worries about her genetic information being “out there,” but suggests it’s no different than worrying about identity theft or having her contact information leaked on the internet. She’s ultimately grateful for the opportunity DNA has given her and is slowly getting closer to discovering the identity of her maternal grandparents.

Most older adoptees, from an era when lies and government policies damaged people’s lives, remain pragmatic about the pitfalls of discovering family secrets or potential life-threatening diseases—unlike the general population, whose expectations cause major anxiety thanks to an unhealthy mix of advertising and media coverage. Writers parachuting into this topic zoom in on subjects with dark family secrets, unbeknownst infidelities and the lies that followed, forgetting about the thousands of adoptees who see DNA in a positive light and continue using it as a life preserver. In a Guardian story published last summer, a woman of mixed heritage who believed she was of Indian descent was disappointed when DNA results indicated no such thing. If she’d known, she said, she never would have taken the test.

It made me think about what kind of privilege exists to believe such a lie, one that black-or grey-market adoptees were never afforded. The same newspaper published another salacious story this past September titled, “Your father’s not your father: when DNA tests reveal more than you bargained for.” “My ancestry test revealed a genetic bombshell” rang out from the New York Post. The Atlantic interviewed a father who divorced his wife and joined a support group after learning via DNA that his daughter was not his. Dozens of headlines like these
papered the media landscape in 2018 alone.

Is there a solution to quell the rash of articles sounding the alarm about this burgeoning science? One suggestion from the Human Fertilization and Embryology Authority (HFEA), a British fertility watchdog agency, is that consumer genetic companies do more diligence in preparing customers for life-changing events rather than promoting sexy ancestral Viking stories or the American who trades his “lederhosen for [a] kilt” after discovering he’s not German but Scottish. The HFEA penned a paper last fall asking Ancestry and 23andMe to caution test-takers about the inherent risks of discovering a predilection to disease or the emergence of new family. Companies such as Grandma’s Genes in Ottawa and My Gene Counsel in the U.S. seek to fill the gap, offering counselling services alongside test results. The overriding sentiment from Cohen was not a desire to learn of her relationship to thousands-year-old ancestors, but the desperate need to know who her mother was. For the dozens of black-market babies I’ve interviewed over the years, submitting a saliva sample or simply making their birth story public wasn’t a philosophical or moral question. It was the only way to get answers.

WHILE ANSWERS MAY prove elusive, questions abound, especially in academic circles. Steven J. Heine, a University of British Columbia psychology professor and author of DNA is not Destiny, believes the future of direct-to-consumer DNA companies is regulation. In his book he takes three separate DNA tests, all with varying results. He details a psychological landscape where our biases negatively dictate the way we view genetic science, and suggests our brains are trying to simplify complex problems about genetics and health with quick-fix answers, much like we do when visiting psychics. “People tend to believe the reason we are the way we are is because we were born that way, that we have this magical force,” he says, “and when we hear science tell us they’re measuring this, we tend to buy into it.” Heine is encouraging people to unwind their expectations that genetic testing answers everything, especially when DNA testing becomes less of a boutique industry and standard medical procedure.

It already has. Here in Canada, a Pharmasave north of Kingston, Ont., began offering medical DNA tests to the public in 2018. The implications are still to be determined. My father, a family physician practising in Vancouver since 1980, says his biggest concern is that insurance companies will hold the medical industry hostage for patients’ DNA when assessing risk.

The justice system is also lauding the critical role DNA is playing in catching high-profile criminals in California and the Netherlands. But not all is rosy. One Canadian is currently suing Ontario’s Centre of Forensic Sciences for “unlawfully keeping” the analysis of his DNA after he was exonerated. A recent New York Times op-ed revealed 74 out of 108 crime laboratories hypothetically incriminated innocent people. Worse, the lab results were first reported four years ago but were not published until now. DNA is being politicized, too, as evidenced by Senator Elizabeth Warren’s five-minute video released mid-October, in which Warren calls a genetics professor at Stanford University to confirm her claim to Native American ancestry—a claim Donald Trump widely challenged. Not only did Warren’s anti-Trump video miss the point—confusing race for ancestry—it’s also a visceral reminder that race politics already intends on including DNA companies.

IT SEEMS FOR EVERY positive there’s a negative—a lifeline for the adoption community is a familial crisis for others; the Dutch catch a criminal while U.S. crime labs put innocents in jail. Perhaps that’s why it’s so complicated to see where we are in the current climate and where the future is headed.

Here in Canada, progress is being made at the legislative level. Last July, the Standing Senate Committee on Social Affairs, Science and Technology chaired by Art Eggleton presented The Shame is Ours: Forced Adoptions of the Babies of Unmarried Mothers in Post-war Canada. It’s a broad, sweeping document detailing the testimony of Canadian mothers forced to relinquish their children to the state. A suggestion from Statistics Canada lists almost 600,000 babies born between 1945 and 1971 and recorded as “illegitimate births.” The report asks for apologies, reparations, and that the federal government work with provinces to “initiate a discussion on the status of provincial legislation governing adoption files, in particular whether parents and adoptees have the rights to access those files.”

Valerie Andrews, executive director of the federal non-profit advocacy group Origins Canada, says the government has until the end of 2019 to respond. Her new book, White Unwed Mother: The Adoption Mandate in Postwar Canada, expands on the committee report, detailing the national mandate to separate unmarried women from their children following World War II. Every province except Nova Scotia has altered provincial adoption law amid changing public opinion and pressure. Andrews calls them “semi-open.” Disclosure vetoes continue to blame mothers, she says, for the institutional failures of government and still prevent truly open access to original birth records. That’s worrisome for anyone still seeking transparency.

If there was ever a time to talk about child welfare and women’s rights in Canada, it’s now. Bill 113, for instance, passed into law in Quebec last June. It promised to peel back red tape for the adoption community; but feedback has been mixed. On the Adoption Quebec Facebook group, questions abound: What is the website address? How do I apply? When will I find out? What if my birth parent is deceased? Do they include identifying information? Sufficed to say, it’s mildly confusing navigating the bureaucratic waters. My mom, for instance, is categorized as an “international” adoptee because she was born in Quebec but adopted into Alberta. Caroline Fortin, president and coordinator of Mouvement Retrouvailles, a non-profit adoption organization based in Lévis, Que., wrote a seven-page letter to the chief adoption officer at the Centre intégré de santé et de services sociaux de la Montérégie Est, urging her to expedite the process.

Andrews says the province’s current bill excludes birth parents from applying—the only province with a “mother-may-I” approach. With the October 2018 election win by the Coalition Avenir Quebec, the first right-of-centre party to win Quebec’s provincial election since 1966, progressive politics may be a thing of past. Fortin is hoping to meet with the new minister of justice to discuss modifying the law. But whether Quebec follows in the federal government’s wake and continues taking steps to de-stigmatize the issue and proactively allow records to become accessible for all remains to be seen.

We have public safeguards that prevent information from being mismanaged or sold, but at some level, we must decide whether we distrust science, the justice system, government, and fear of the unknown, or if we’re willing to take the leap of faith that our institutions are working for and not against public interest. For women like Kawalek and Cohen, the risk is worth it when the past has been buried for so long.

Heine suggests that scientists believe one billion people will have their genome sequenced by 2025. Count me as one of them. Last July, I visited my parents in Vancouver armed with my test results. My father’s Ashkenazi Jewish side contrasted sharply with the Acadian names that belong to my mother’s unknown biological family. Recent upgrades to Ancestry’s website now include samples from 380 regions (up from 22 in 2012) and a five-fold increase in reference samples from people who have “long-standing roots” in specific parts of the world. (Customers with African or Asian ancestry had reported conflicting results, suggesting a possible racial bias.) My updated results arrived in September. I’m six percent Spanish instead of 12 percent Iberian and my helix is now distinguishable between Ireland and Britain, where I present 14 percent. What used to be called Europe West (23 percent) is now France (28 percent). That Ashkenazi Jewish in me? I’m up from 44 percent to 50 percent.

It is, however, a bit confusing. My mom, once a hodgepodge of European ancestry, is now 100 percent from France. Shouldn’t that mean I’m 50 percent French rather than 28 percent, I asked a customer service representative at Ancestry. She explained DNA “washes out” generationally, which made me think of my ancestors drying their laundry, not where I come from. The new updates have actually created more questions than answers as we piece together a family tree and contact potential family members. But we’re making progress. Paying an extra $60 annually means publicly accessible family trees, census records, and shipping documents, the latter invaluable when tracing Canada’s immigration history—and my own. I found the ship that brought my father’s Russian-born great-grandmother and her children to Canada at the turn of the 20th century. A woman living in Alabama contacted me. Did I know the Segals from Winnipeg? she asked. I emailed her a family photo from the 1930s. My father’s long-lost second cousin sent back the exact same one. The irony was not lost—in the search for my maternal family, my father’s surfaced.

Like it or not, your genetic coding is an emotional experience. It’s personal; it’s family; it’s yours and yours alone. If there’s a fear, it’s of the unknown, of something
beyond your control. There is, I believe, a sense that knowing the truth, or even discovering the lies of our ancestors, is important.

THE FUTURE FOR DNA IS a murky landscape fraught with potholes for millions of customers with varying agendas. I’m not unsympathetic to those with fears; but I’ve spoken to too many people whose lives have been changed for the better thanks to a little spit in a tube. Several universal questions still deserve answers, whether those answers come from science or government: Who are we? Where do we come from? For thousands of years, these questions were philosophical and religious in nature, isolated to specific regions of the planet, not bound by provincial law. Now, science has offered another layer to the puzzle.

What does it mean for us? My mom took her first DNA test in the early 2000s. The connections were distant, the geography broad. She recently matched on Ancestry with a new second cousin, Lyne, one of her closest biological relatives. Lyne’s own mother, who is from a small town in New Brunswick called Caraquet, recently agreed to take a DNA test. After watching Les Berceau des Anges, a 2015 miniseries about the black market babies saga, I asked Lyne what she thought about our unorthodox story. “When you watch a TV show, you watch part of history, of a past generation,” Lyne said. “When you realize you know someone who lived it, it’s shocking.”

While her birth mother’s identity remains a mystery, my mom simply says: “I never even thought I could go this far.” The blank slate presented to her often felt finite, a mystery. Now, the future finally seems infinite.

Eleanor Sinclair at her daughter Windy’s vigil. Photo courtesy of Ryan Thorpe

It was freezing in Winnipeg, cold enough that frostbite threatened to set in minutes; the kind of cold that sets deep in the bones, down to the marrow. Unforgiving wind ripped through flat, icy streets, and snowdrifts piled along sidewalks. A frigid, stainless steel sky descended on the prairie capital.

By the time Windy Sinclair, a young Indigenous mother, went missing Christmas night in 2017, an unrelenting cold snap was stretching into its second week. In the days after she disappeared, her family phoned police, hospitals, remand centres, and downtown hotels and bars, asking whoever picked up if she was there. They monitored her social media accounts for signs of life. They loaded into an old van, maneuvering through the city’s sleet-covered streets, in search of her. Her children wondered when she was coming home. Her mother prayed.

Then, four days after the disappearance, came the knock at the door. Windy’s crumpled body had been found in a dirty, inner-city back alley, so frozen it took police two days and two space heaters to unthaw it enough to move.

Six weeks later, Eleanor Sinclair stood and stared at the spot her daughter was found frozen and dead. Her shoulders slumped forward and shook as she sobbed. Her head hung low as if in prayer. As tears crested her cheekbones, she whispered something to herself—or maybe to her daughter’s spirit. On that day, Windy would have turned 30. In her memory, Eleanor organized a vigil. Nine people showed up. One of them, a small child held in her mother’s arms, wanted to leave as soon as they’d arrived; it was still incredibly cold out. The group huddled in the back lane, bracing themselves against the elements.

It wasn’t as cold that day for the mourners as it had been when Windy arrived. The last week of her life was one long severe weather warning. It remains unclear how Windy ended up at the spot she was found. What is known, however, is that the chain of events leading to the discovery of her body was remarkably tragic, yet entirely commonplace.

Windy’s death marked one more soul snatched away from the streets of Winnipeg, a city with a long history of Indigenous murders and deaths that sits like an open scar on the community’s heart. Had Windy’s body not been found, it’s likely her death would have passed like those of so many Indigenous women: unreported and ignored.

***

On December 25, 2017, as the Sinclair family prepared to sit down to a traditional Christmas supper of turkey, mashed potatoes, biscuits, and gravy, paramedics were dispatched to their North End home. The area has long been Winnipeg’s most socially disadvantaged and deprived, pocked by high levels of addiction, crime, and gang membership, and low levels of employment and median income. Bordered on the south by a rail yard, the North End is cleaved off from the rest of the city. Community activists say the yard serves as both a physical and psychological barrier between the haves and have-nots; one local playwright described it as Winnipeg’s Berlin Wall.

That night, Windy was intoxicated, hallucinating, and paranoid, convinced a man was coming to kidnap her and her daughter. Eleanor had been concerned with her behaviour all afternoon after she’d caught her mumbling to inanimate objects in their home. “I knew right away she wasn’t herself,” she remembers.

At 11:15 p.m., a nurse went to check on Windy and tell her she was expecting a child. But she was nowhere to be found

The erratic behaviour kept escalating. Eventually, Windy picked up the phone and dialled 911, telling the operator someone was coming to steal her children. Eleanor grabbed the phone and explained what was really going on: Her daughter was high and confused, and while she worried for her well-being, she thought the safest place for her was at home. After hanging up, Eleanor tried to calm her daughter down. It didn’t work. Windy dialled 911 again. Once more Eleanor took the phone from her. In doing so, she accidentally hung up. Two calls in one night with a disconnection meant the operator had no choice; someone had to be dispatched.

Minutes later, an ambulance pulled up to the home. Paramedics checked Windy’s vitals and asked her some questions. In an incident report, one wrote that during the conversation Windy stood up abruptly, walked to the kitchen sink, and turned on the tap. Then she walked back and sat down, leaving the water running. The paramedics asked what drugs she did and Windy told them she injected methamphetamine, explaining sometimes she mixed it with opioids like fentanyl or morphine. Under the portion of the incident report labeled “Primary Impression,” a paramedic wrote: Poisoning/OD.

The paramedics told Eleanor that Windy needed to be transferred to Seven Oaks General Hospital for observation and testing. That forced Eleanor to make a decision. Two of Windy’s children—Travis, then 11, and Samarrah, then five, both of whom Eleanor has custody of—were at her home. The children had been in Eleanor’s care throughout the entirety of Windy’s battle with addiction, which began after her father died in 2015. (Windy also had two other children—Aaron, eight, and Harvey, five—who were not at the home that night. Aaron lives with his father, while Harvey is in foster care.) Eleanor knew she couldn’t leave the children at home. She also didn’t want to take them to the emergency room on Christmas. She decided she and the children would stay home and check on Windy the next day. She explained to the paramedics that should anything come up, hospital staff would have to call her at their family home, not the out-of-date number listed on Windy’s medical file. The paramedics wrote down the correct emergency contact number and promised to pass it along to staff when they arrived at Seven Oaks. As her daughter was led out the door, Eleanor pushed a winter coat into her arms. The temperature outside was nearing -30 C; she hoped it would keep her warm.

Hospital records show Windy was signed into the care of Seven Oaks emergency room staff at 8:06 p.m. Ten minutes later she was seen by a triage nurse, who noted in Windy’s file she was an intravenous meth user behaving erratically. Staff then led Windy to a nearby room, located close to a nursing station where she could be observed, to wait for a doctor. Once again it was noted in her file that she was behaving strange: Her speech was slurred and she told staff she wanted to leave. For still-unknown reasons, the decision was made to move her to a different room, tucked away at the back of the hospital wing, far from the watchful eyes of the nursing station.

At 8:48 p.m. Windy was seen by a doctor, who ordered an IV sedative and a pregnancy test, the latter standard procedure for women of child-bearing age when they come to an emergency room. The results would later show Windy was two months pregnant; there’s no evidence to suggest she knew. At 11:15 p.m. a nurse went to check on her and tell her she was expecting a child. But Windy was nowhere to be seen. Windy had pulled out her IV, gathered her belongings, wandered down the hall, and walked out the hospital’s east exit. Security footage shows her stumbling out the door, her jacket undone as she ventured outside.

When hospital staff realized she was missing, they pulled up Windy’s medical file and called the out-of-date emergency contact number listed. No one picked up. Either the paramedics did not pass along the correct phone number, or staff didn’t bother to call it. Windy’s family was not told she was missing, and no further efforts were made to contact them.

Three days later, on the morning of December 28, a woman looked out her apartment window in the city’s West Broadway neighbourhood, roughly 10 kilometres south of Seven Oaks. She saw something in her back lane, but convinced herself it was a pile of clothes. Minutes later, second guessing her eyes, she walked out back to check. It was Windy’s body, tucked away out of sight in a back alley by a heating vent.

***

There are many holes in the story of Windy’s disappearance. It’s unclear why she was moved from a room where she could be closely observed to one at the back of the hospital wing. It’s unclear why no one checked on her for so long after she was given a sedative. It’s unclear why she was left alone while exhibiting signs consistent with drug-induced psychosis and expressing a desire to leave. It’s unclear why she wasn’t held under the Mental Health Act, which allows people to be detained for their own safety. It remains unclear whether or not a “Code Yellow”—a hospital procedure used, among other reasons, to search for patients who leave against medical advice—was called after staff realized she was missing. It’s unclear why Windy’s family wasn’t notified she had disappeared. It’s unclear why Eleanor was told, when calling the next morning to ask about her daughter, that she’d completed treatment and was discharged. So much about what happened, and did not happen, remains unclear. And that, Eleanor says, is because her daughter was Indigenous in a hospital in Winnipeg.

Winnipeg: The city once dubbed Canada’s most racist by Maclean’s magazine. The city of J.J. Harper, Brian Sinclair, Claudette Osborne, Matthew Dumas, Errol Greene, Tina Fontaine, and countless others whose deaths and disappearances went unreported and whose names no one will ever know. Eleanor recognizes her daughter made poor choices that helped lead her to the alley where her body was found. She also believes her daughter was failed by Seven Oaks. That she still had time to turn her life around. That her death was preventable. Eleanor says the fact her daughter’s skin was brown altered what did and did not happen the night she went missing.

The details of Windy’s death kicked off a minor media stir, with the city’s major news outlets all chasing the story, and Canadian Press copy picked up by national publications. (The writer of this piece was among reporters covering the story.) But news cycles are quick and collective memory short. Six weeks after her body was found, only one publication sent a reporter to Windy’s vigil. The city’s meth epidemic had already offered up new casualties. In August 2017, a police spokesman told reporters Winnipeg was in the grips of a serious meth problem. Months later, the chief of police said at a press conference that the situation was so bad it was starting to keep him up at night. By all accounts meth is easily available and readily consumed on the streets of Winnipeg, which has corresponded with an uptick in violent and property crimes carried out by those desperate to fund their next hit. A local harm-reduction program estimated it gave out 1.5 million clean syringes over the past year. During a six month period that year, the Bear Clan Patrol, an Indigenous-led crime prevention group based out of the North End, said it picked up 3,000 used needles off the street.

At the vigil, Eleanor lit a candle and whispered a prayer for her daughter. Meanwhile, a few kilometres away, hundreds came together in the city’s downtown at The Forks, the historic meeting place of the region’s Indigenous peoples. They gathered in opposition to the verdict in the Gerald Stanley second-degree murder trial. Colten Boushie, a 22-year-old Cree man, was shot in the back of the head at point blank range in August 2016. After deliberation, an all-white jury acquitted Stanley, the Saskatchewan farmer who pulled the trigger, sparking nationwide protests and outrage.

With so much death and pain it can be hard to keep track of all the vigils. In front of flashing cameras and reporters scribbling in notebooks, demonstrators expressed frustration and anger at what many call the systemic racism of the Canadian justice system. Addressing the crowd, then-Manitoba Keewatinowi Okimakanak Grand Chief Sheila North declared that 150 years of Canadian history weighed on Stanley’s finger as he pulled the trigger. “It wasn’t just an accident. There were years of history that went behind that gunshot that took that life,” North said.

As the words fell from North’s lips, Eleanor wept, standing over the spot her daughter’s body had been found, lamenting what she believes is the institutional racism of the Canadian health care system. The sense Windy’s death had already been forgotten was palpable. It was exactly what Eleanor feared most: Her daughter had become a statistic. “She’s just one more dead Native woman,” Eleanor says.

Twelve days later, the jury in another high-profile murder trial ended deliberations. Raymond Cormier stood accused of murdering 15-year-old Tina Fontaine, whose body was pulled from Winnipeg’s Red River in 2014, wrapped in a duvet and weighed down with rocks. Her death was a catalyst for the creation of Canada’s National Inquiry into Missing and Murdered Indigenous Women and Girls. The hope of “Justice for Tina,” the rallying cry shouted at protests in her honour, was in many ways the stand-in for the overdue justice that had eluded too many for too long. The verdict: not guilty.

***

After her daughter’s death, Eleanor had a series of meetings with staff and administration from Seven Oaks General Hospital and the Winnipeg Regional Health Authority, the city’s governing body for health care regulation. She was looking for answers, but says she came out with more questions. (The Winnipeg Regional Health Authority declined comment for this story, saying it couldn’t speak publicly about the case due to patient privacy concerns.) When interviewed in June, Eleanor said she still had not learned whether or not hospital staff called a “Code Yellow” when Windy disappeared, which could have protected her that night. She also says a doctor who attended one of the meetings told her Windy had been “lucid” enough to leave on her own the night she went missing.

“She was hallucinating. She was clearly under the influence. They had given her a [sedative]. But she’s lucid enough to leave?” Eleanor says. “They didn’t even look for her. Her life didn’t matter to them. I even told them, ‘If it was that cold outside, you would bring in your pet. You’d have that compassion for your pet. Why didn’t you show my daughter that compassion?’”

Shortly after a local news outlet reported the discovery of Windy’s body, the Winnipeg Police Service, in one of its only public statements on the case, said it did not consider her death suspicious and would have no further updates for media. How and when she got to that back alley is still a mystery. Manitoba’s chief medical examiner has not yet provided an official cause of death.

A 2015 report says anti-Indigenous racism is so common in the nation’s health care system that “people strategize around anticipated racism before visiting the emergency department or, in some cases, avoid care altogether”

Eleanor will likely never get the answers she’s after. On one point, however, she has no doubt: Had the hospital done what it was supposed to, Windy wouldn’t have ended up in that alley. In her view, the hospital failed in its duty of care. And that, she says, is symptomatic of the systemic racism simmering below the surface in Winnipeg hospitals.

A few months after her daughter’s death, while the meetings with hospital representatives were still ongoing, Eleanor sat at her kitchen table reminiscing about her late husband, and Windy’s father, Brian. He had been chronically ill prior to his death, so the two of them often went to Winnipeg’s Health Sciences Centre, the closest hospital to their home. “The first thing the nurse would say to him when we walked in was, ‘Okay Brian, what kind of drugs do you want now?’” she says. “It’s not, ‘Hey Brian, why did you come to the hospital? What symptoms do you have?’ That’s the attitude. That’s the kind of treatment he would get.” The racism her husband experienced at Winnipeg hospitals made him increasingly unlikely to seek out medical treatment late in life to avoid the humiliation he felt being stereotyped as the drug-seeking “drunk Indian.”

Research on anti-Indigenous bias in Canadian health care shows Eleanor’s husband wasn’t alone in feeling this way. Citing a string of academic studies, a 2015 report published by the Wellesley Institute, a Toronto-based non-profit think tank, says anti-Indigenous racism is so common in the nation’s health care system that “people strategize around anticipated racism before visiting the emergency department or, in some cases, avoid care altogether.”

A 2011 study cited in the report took a closer look at the experiences of Indigenous and non-Indigenous people accessing care at an inner-city emergency department. The researchers found Indigenous participants believed being identified as “Aboriginal and poor” may negatively affect their credibility in the eyes of health care professionals and hinder their ability to get help.

Refusing to go to the hospital, Eleanor’s husband died of pneumonia at home in December 2015. His death served as the spark for his daughter’s struggle with addiction, which would later lead her into the emergency room of Seven Oaks. Two years to the day of Brian’s death, police arrived at Eleanor’s home, telling her Windy was dead.

Dr. Shannon McDonald, the Deputy Chief Medical Officer for British Columbia’s First Nations Health Authority, who called Winnipeg home most of her life, says it’s nearly impossible to say for certain whether anti-Indigenous racism was at play in how Windy was treated at Seven Oaks. “I suppose we can say it’s possible [racism was a factor]. Knowing some of the previous circumstances in Winnipeg that have been well reported, it may even be probable,” McDonald says. These previous incidents include, among others, the death of Brian Sinclair (who shares the same name as Eleanor’s deceased husband, but is not related). Sinclair, a 45-year-old double amputee confined to a wheelchair, came to Winnipeg’s Health Sciences Centre seeking help for a blocked catheter in September 2008. A subsequent inquest into his death determined he was ignored for 34 hours while waiting in the emergency room, with staff later admitting they assumed he was drunk, homeless, or both. He died of a treatable bladder infection in Manitoba’s largest hospital. By the time anyone noticed he was dead, rigor mortis had set in and an official time of death couldn’t be determined.

The Brian Sinclair Working Group, a collection of doctors and academics who conducted an investigation into Sinclair’s death, released a report with a series of recommendations in September 2017. That month, in response to the report, the interim president of the Winnipeg Regional Health Authority said it was time to “come to terms” with the way “systemic racism” can affect health care services. Three months later Windy walked into the emergency room at Seven Oaks.

“This young woman coming in, intoxicated, incoherent, she would have been considered troublesome,” McDonald says. “This young woman would have confirmed for some people their image of a drug-using Indigenous person, who may not have been considered as valuable as other patients. I’ve worked in situations where that’s the case, where people that I’ve worked with professionally sometimes see some patients as more worthy of their efforts than others.”

***

Eleanor has still been fighting to learn more about what happened that night. She’s also trying to get Seven Oaks to acknowledge the ways she says hospital staff let her daughter down. Both of those battles, Eleanor says, have so far been in vain. “Her life should matter to them. Her life did matter,” Eleanor says. “But I am going to make sure that changes are made. And if I have to go protest outside the Seven Oaks then I will do that. I can’t let them get away with this one. She mattered. She mattered to a lot of people.”

At the same time, Eleanor has been raising two of Windy’s children, Travis and Samarrah. She dreads the day Samarrah starts asking hard questions about what happened to her mother. She doesn’t yet understand it, and can’t wrap her head around the fact her mom is really gone. “She’s going to ask me what I did about it,” Eleanor says. “So I need to be able to say I made them accountable. That I did anything that I could to try and make her life meaningful. To make sure that nobody else goes through this.”

Sitting in her home, the last place she saw her daughter alive, Eleanor broke down and cried, recounting the time, not long after Windy died, when she took her granddaughter on a trip outside the city.

“I had to drop my Mom and Dad off out of town. I took her with me. On the way back she said, ‘I can see the stars.’ Because she hasn’t been out of the city in the longest time. I said, ‘Yeah baby, there’s a lot of stars out there.’ So we stopped and got out and looked, and she said, ‘I miss my Mommy.’ And I said, ‘Yeah baby, I miss her, too.’”

Eleanor’s voice began to quiver and shake. She tried to compose herself, holding it all in to finish the story. But the dam had cracked behind the weight of the pain. Then, it burst open. She lost control, the words barely audible through her sobs.

“I said, ‘Look for the biggest star baby, that’s probably your Mom.’ So she’s walking around the van trying to find the biggest star. Then she finally finds it and she goes, ‘That’s my Mommy. That’s my Mommy shining brightly.’ And I said, ‘Yeah baby, that’s her.’”

That night, Eleanor made up imaginary errands the two of them needed to run. Her granddaughter didn’t want to lose sight of the star, and Eleanor didn’t have the heart to spoil it for her. They just kept driving, staying out until the clock on the van’s dashboard read 3 a.m. Eventually, she pulled back into the city, winding through the residential streets of the North End, before parking outside their home. Then she carried her granddaughter inside and tucked her into bed, as her mother had once, long ago, in better times.

“Now once in a while she goes out into the backyard and tries to find that star,” Eleanor says, with tears in her eyes. “But here in the city, you can barely see the stars.”

In Mildred Grace German’s piece Stigma Kills, the artist aims to depict how mental illness and addiction can affect anyone, regardless of their background or location. The artwork was inspired by the ongoing battle for social justice in Vancouver’s Downtown Eastside, where German lives. The piece was on display at the University of British Columbia as part of a student art show exploring the impact of the opioid crisis from a youth perspective.

It was the second day of the Calgary Stampede, a 10-day bonanza of cowboy-themed festivities in the Canadian province most stereotyped by its beef, oil, and country music. Nearly every local business had shut down for the week. “It’s our biggest holiday. You just don’t mess with the Stampede,” Calgary-born Mandy Alston tells me nearly a year later.

The 27-year-old has worked in the hospitality industry for the better part of her adult life, and most of her friendships were established in restaurants, bars, and while hosting corporate events.

That day last July, Alston had just been given a case of Prosecco by one of her distributors and was getting ready for an engagement party. Then she got a call. Her boyfriend suggested she not come; it was a friends-of-the-family–only event. When Alston later found out her partner was there with another woman, things unravelled. The affair had been going on for months. She had been betrayed not only by her partner, but by her friends who lied on his behalf to cover up the liaison. “These were people I had known for seven years… I was devastated.”

Alston’s coping mechanism was to self-medicate with alcohol and drugs. She started to spiral, losing weight. “I would essentially wake up and start drinking. I couldn’t even tell you how much cocaine I would do in one day,” she remembers. “I was a mess.”

In Alston’s industry, there is little talk about research-based solutions to addiction or behavioural interventions for mental health. Friends would respond to everything by suggesting a drink or a line. “It’s a supported addiction,” she says.

Alston was teaching spin classes while running restaurants and working for clients, so she felt she had to hide her vulnerabilities. Cocaine, she says, helped her remain positive around others. She could still be the happy, peppy person that everyone knew. “No one had to know that I was going through pain,” she says.

The first time Alston used cocaine was with her ex on vacation in Mexico on New Year’s Eve. She started to work in nightclubs more often, planning and hosting events. “Cocaine was readily available. At first I didn’t like that because I couldn’t sleep,” she says. She stopped doing it for a while, but she then figured out what she calls “the balance.” “It was a quick line here and there and with that came a drink. I would do a line and think, ‘Now I need a drink,’” she says. “The habit formed so fast that I thought, ‘Wow, I’m in this,’” she remembers.

We know that while trauma resides at the roots of addiction, another aspect that holds incredible power is when learning mechanisms go wrong. This is often understood through the field of neuroplasticity. “Cells that fire together wire together,” wrote Donald Hebb, a Canadian neuropsychologist working on associative learning at Harvard University, in 1949. Marc Lewis, a neuroscientist who considers addiction a brain malfunction rather than a disease, has written similar findings extensively. “The more you repeat a behaviour, the more likely your brain is to produce a reward in response to that behaviour. With each repetition, activated synapses become reinforced or strengthened… and alternative [less-used] synapses become weakened or pruned,” he wrote. “Repeated patterns of neural activation are self-perpetuating and self-reinforcing: they form circuits or pathways with an increasing probability of ‘lighting up’ whenever certain cues or stimuli [or thoughts or memories] are encountered.”

In healthy brain functioning, highly pleasurable “rewards” are experienced in the limbic system—the brain’s more primal, impulse-driven centre—and rational thoughts about responsibilities and consequences happen in the prefrontal cortex. In addiction, the former overrides the latter: the decisions made in the rational system of the mind are vetoed by the reward-driven system of the mind.

The good news is that many in the field of addiction and mental health are beginning to understand this and are working toward solutions that help take back the prefrontal cortex’s control. Medication-assisted treatment (MAT) programs are on the rise, and could be a solution for many. MAT combines psycho-social interventions like cognitive behavioural therapy (CBT) with medications that are offered on a 30- to 60-day plan to reduce the endorphin reward. This lessens the reward-seeking drive so the brain can go back to commanding our actions rationally.

What’s thwarting the success of these programs, however, is an after-effect of the opioid overdose crisis. Echoing failed policies of the drug war, calls for banning all pharmaceuticals are counter-productive and even dangerous. But the hysteria surrounding pharmaceutical intervention is understandable and expected, says Elliot Stone, CEO of Alavida, a MAT program based in Vancouver. “People are upset about [others] dying and opioid addiction is a very serious thing, so it’s a natural [response],” he explains. “With alcohol, someone tells you that you have a problem, then you have a chance to get better.” But with opioids, he says, “you die, immediately in many cases. It’s human nature that people are focusing on this.”

I asked Stone, whose program focuses on alcohol addiction, if he felt alcohol had been lost in the dialogue on addiction given the current news cycle centred on opioids. “I don’t think alcohol is getting the attention it should,” he says. “But I think it’ll come around. Mental health is starting to be appreciated, and there’s a general movement in the right direction. It’s just going to take time.”

Stone’s program combines evidence-based practices in two worlds that he believes are closely related, but that don’t often intersect: the world of psychotherapy and the world of medicine. On the medical side, Alavida uses the opioid antagonist Naltrexone, which partially blocks opioid receptors so that they can’t fully deliver the pleasure they normally do. “[These medications are used] as a tool to essentially retrain the brain and to make the process of paring down your drinking easier from a biological sense,” he explains.

When you don’t get the neurochemical reward, then you aren’t as inclined to seek the substance that delivers it. “If [we’re] able to block that reward for a period of time in specific circumstances, it can pull someone out of that compulsive cycle and give them a bit of space to make decisions,” Stone explains. And that space is where his program really doubles down on the psychotherapy aspects like CBT, motivational interviewing, and traditional therapy.

Because her case was less severe than many addicted to alcohol, on her own, Alston was able to figure out how to achieve some of the components that successful treatment plans like Stone’s and other MAT programs incorporate. She moved from Calgary to Vancouver to get away from her triggers that set her reward-seeking behaviour in the driver’s seat, and sought out relationships that didn’t expect her to be happy and peppy all the time, or those who suddenly became too busy when things got tough. People who, when she’s going through a rough patch, don’t just resort to buying her a shot. “I’m cooking dinners, I’m being honest, and I’m enjoying my life,” she tells me happily.

“I’m out of my ‘darkness place.’”

Photo courtesy of Canopy Growth Corporation

Hilary Black is tired. “Really fucking tired,” actually, she says. She’s been doing this—fighting prohibition, advocating for the rights of medical cannabis patients—for 21 years. And now she’s at the outset of an entirely new chapter: She is in charge of the social responsibility and patient advocacy arm of Canopy Growth Corporation, one of the country’s most prominent cannabis companies, as it’s on the brink of a legalization explosion.

So yeah, she’s exhausted. “It feels like I’ve done 40 years in 20 years’ time,” she jokes. Black is 41, and has spent virtually all of her working life fighting for the rights of medical cannabis users, from her early days with the BC Compassion Club Society (which she opened in 1997) through her 2015 hiring at Bedrocan and subsequent rising through the corporate ranks to her current role as the director of patient education and advocacy with Canopy.

But now, as she helps lead the charge into the legalization era, she’s facing a new challenge: What do you do when you get the thing you’ve wanted your entire life? You stay a little bit angry, that’s what. You recognize that for every step forward the world makes with cannabis, there will always be someone who still needs an advocate—like the patient who can’t afford her medical cannabis (Black recently testified at Parliament against the $1-per-gram excise tax on medical cannabis); or the victims of the opioid crisis, for whom medical cannabis holds promise (one of Black’s recent projects was the creation of a research position at the University of British Columbia on cannabis and battling addiction).

Like many other activists now working in the corporate world, she sometimes gets accused of being a sellout, of turning her back on her activism. She gets it, but she doesn’t buy it: She’s trying to make the position work to her advantage. “I’m very empowered working with Canopy, because it’s such a financial engine,” she says. “I have a lot of influence inside the country.”

Her influence comes from a unique perch within Canopy: As a woman, driven by an activist’s sensibility, she is in one sense at odds with much of the rest of the male, high-finance cannabis world. That role affords her a voice—she has a deep activist pedigree that carries weight throughout the cannabis industry, legal or otherwise—and allows her to act as a role model in a way that few people in the industry can. “I want every single cannabis company in the world, whether you’re a massive company like ours, or you make lip balm, I want everyone to have a corporate responsibility initiative,” she says.

She still doesn’t shy away from compassionate rebellion against the law, even if on a different scale. Black’s dog, Ringo, is sick, and nearing the end of his life—bone cancer. Vets said he had two months. She says, heavy doses of CBD have given him seven. Strictly speaking, this isn’t legal; her dog gets CBD through a small act of compassionate civil disobedience. “He has access to it because he has me,” she says. “I want all the suffering dogs to have access to it.”

Once an activist…

Illustration by Erin McCluskey

On a rainy Thursday in April, I arrive at a yellow brick, split-level house in London, Ont. People are doing word searches at a large dining table. Some help themselves to a container of freshly baked peanut butter cookies, and CBC News is playing on a television in the living room. This house, tucked away in a quiet, tree-lined neighbourhood a few kilometres from London’s gritty city centre, feels almost like a family home. “You’ve come right in time for morning break,” says Sarah Dutsch, the homeowner, as I take off my shoes. This is one of Ontario’s Homes for Special Care: a controversial custodial housing program for people living with severe psychiatric challenges. Sarah and dozens of other Homes for Special Care operators are now in talks with the Ministry of Health and Long-Term Care about the future of mental health housing in Ontario.

At first I am surprised by the peaceful, if static energy at Sarah’s place this morning. In the weeks leading up to the visit, mental health experts expressed to me major concerns about Homes for Special Care. They are government-funded, for-profit operations, born in the 1960s as a place to live for those discharged from psychiatric hospitals. Today, they are criticized for offering outdated and misguided support to vulnerable people. Sarah and her staff spend 24 hours a day, seven days a week caring for eight tenants living with mental illnesses, including schizophrenia, obsessive-compulsive disorder, and bipolar disorder.

She bought the Home for Special Care and renamed it the Dutsch Residence six and a half years ago, leaving behind a travel and tourism career in British Columbia because she wanted to do something “more meaningful” with her life.

In her kitchen she points to a row of colour-coded cups, one for each tenant, on a windowsill. There is also a code of ethics on the fridge, sign-up sheets for activities, and a list of tenants’ initials on the wall so Sarah can keep track of who is around for mealtimes. Residents can take out money from their monthly allowance from the Ministry of Health and LongTerm Care three days a week; Sarah goes to the bank to do the withdrawals. With the help of staff members, she cooks three meals a day (plus snacks), cleans, does laundry, shops, and supplies personal items like soap, shampoo, and diapers.

Outsiders may criticize the Homes for Special Care program, but it doesn’t change Sarah’s perspective on them. “We can’t lose the reason why these homes exist in the first place: to provide a safe, directed program, based on the needs of the tenant,” she says. “Sometimes the supports need to be pretty active, and that’s okay.”

Research, however, shows that the unconditional and mandatory support in place in Homes for Special Care operations could be hindering some residents from building the skills they need to reintegrate into the world around them. The program “meets almost no best practice criteria, and this has been known for 35 years, at least,” says John Trainor, former director of the Community Support and Research Unit at the Centre for Addiction and Mental Health (CAMH). At one time Trainor was in charge of inspecting some Homes for Special Care operations in Toronto, and for decades he tried to close the program down. “It’s a scandal, really,” he says. “It shouldn’t be there. It’s worse than many models in countries with fewer resources.” In the 1990s, Trainor says he was pulled into a meeting with senior Ministry of Health and Long-Term Care officials who told him that the program was, in fact, slated for closure. But those plans never went through. “We never got called back to another meeting,” he says.

Founded at the start of de-institutionalization, in 1964, and despite the Ministry’s apparent efforts to shut the program down, Homes for Special Care endures. Now, the program that houses some of the province’s most mentally ill citizens is slated for modernization, to be completed by 2020. Homes for Special Care operators and the Ministry of Health and Long-Term Care agree that the program needs to change, but the two sides are at odds about what, exactly, to improve. Talks are stop-and-go. Outside experts, including Trainor, question if the 50-year-old custodial housing program should exist at all.

***

In Sarah’s dining room she begins to introduce me to some of her tenants—eight people who are part of a group of hundreds in Ontario whose lives and homes are at the centre of this debate. A woman named Carol (whose name has been changed to protect her identity) with grey hair and a stable, intense gaze appears from the kitchen. As I turn around to greet her, she immediately asks to speak with me in private. Sarah grows tense as Carol leads me into the living room.

We sit side-by-side on a couch. Carol wears a pink, flowery shirt and though she has asked to talk in private, she speaks loudly enough that Sarah can hear her from the adjoining dining room. “I don’t like the atmosphere here, it has a very negative impact on me,” says Carol. Years ago, Carol lived in a supportive housing apartment for individuals with disabilities with her boyfriend, James. After more than one fire started in the apartment and bed bugs were found, Carol and James were evicted, and Carol found herself living in Sarah’s residence. Her niece now picks her up and drives her for weekly visits to see James who, following the eviction, was placed in a tightly controlled long-term care home. “It was hard for me to adjust, because of not having the nurturing relationship [with him],” says Carol. She says she wants to live independently again, to be with James; she feels restless and isolated. I ask what she likes to do for fun. “I go to the variety store quite a lot,” she says. Sometimes, she stays in her bedroom. “I have my TV in there and I like the solitude.”

As Carol and I talk I can feel Sarah’s presence in the next room. She sighs audibly and then appears in the doorway: “Should we set a time limit on this?” This was not how she expected the visit to start, she admits. Later, she tells me Carol has “stuff on the go” almost every day—community programs three days a week and visits with her niece and James on Tuesdays. Still, Carol maintains that she wants more. “I call Carol my Eeyore, lovingly, because everything is always dark even though she has the most supports,” says Sarah.

In a series of meetings conducted by the Ministry of Health and Long-Term Care for the modernization of the Homes for Special Care program, many residents echo Carol’s sentiment: They want more independence. The Ministry did not agree to multiple requests for interviews, and they would not provide me with the raw data from the survey they conducted, or the interview notes.

But other research shows similar findings. In a 2017 meta analysis of housing choice for people with mental disorders, published in the journal Administration and Policy in Mental Health and Mental Health Services Research, researchers’ pooled analysis showed that 84 percent of study subjects preferred to live in their own apartment, with family, or with people with whom they’ve had a choice in selecting.

However, Homes for Special Care operators argue that some tenants would struggle to live without the constant and custodial support that they provide. “I invite [critics] to come for a weekend. Because this type of program, as much as they disagree with it, it works,” says Lisa Zavitz, an energetic, self-effacing woman who runs another eight-bedroom home down the street from Sarah. For some, she says, “if someone is not there cooking them a meal, they don’t eat. If I don’t remind them to put on deodorant and change their underwear, some of them won’t. This is the reason we’re here.” Jim Akey, who owns one home in St. Marys, Ont., and another in St. Thomas, Ont., had similar concerns about independent living: “Some people might function fine with it, but I think they would be the exception, rather than the rule.”

When I posed this idea to Geoffrey Nelson, a psychology professor at Wilfrid Laurier University whose research focuses on community mental health programs, including Homes for Special Care, he disagreed. “That’s the kind of mindset that makes people stay where they’re at,” he says. “Some operators don’t believe that people have the potential for recovery, but we know from research that a substantial number of people with mental illness do get better.” Nelson conducted a study of mental health housing in London, Ont., in 2003 for the Canadian Journal of Community Mental Health. The study found that while 79.3 percent of subjects said they preferred independent living, 76 percent were not living in independent housing. Also, with the exception of only two people in the study, subjects who said they preferred to live in Homes for Special Care were already living in one. “When you start saying people can’t survive outside these walls, you might get a self-fulfilling prophecy,” Nelson says.

John Sylvestre, vice-dean of research at the University of Ottawa’s Faculty of Social Sciences, is the co-editor of a textbook on mental health housing. When I called him at his office on campus, he agreed. “If people want to try, let them try. Who am I to say that a fellow citizen has gone far enough?”

At the Dutsch Residence, Sarah and Carol lead me to the basement to see Carol’s bedroom. Full of books, photographs, and art, Carol’s room is small and lived in, and she appears proud of it. She is one tenant in the house with her own bedroom. In two other bedrooms, Sarah has created privacy barriers using various objects. For one tenant, a sizeable sheet of plywood from Home Depot and a dark wood dresser that’s taller than his bed separates him from his two roommates. “In a perfect world would he benefit from a single room? Probably,” Sarah says. In another room, she’s separated two beds using a room divider from Jysk, an affordable furniture store.

“We still see that people are sharing rooms with unrelated adults,” says Sylvestre. “They don’t get to choose who [their roommates] are. That’s not accepted in any other part of the specialized housing system. We’re in 2018 and to still see a form of housing that isn’t in its basic form or shape changed since the [1970s], I find it disappointing.” Some homeowners, including Sarah, say some tenants like sharing rooms. Plus, at the current level of funding, she says the only way she can operate this business is by housing eight tenants in a four-bedroom house. Long-term care homes in Ontario, and prisons and hospitals across Canada all get more per diem funding than Homes for Special Care. To keep a resident in hospital costs the province between $700 to $1,400 per day, according to the 2018-19 Ontario hospitals’ interprovincial per diem rates for inpatient services. In Homes for Special Care, a resident costs the province $51 per day.

In Sarah’s kitchen, jazz plays on the radio as Sarah puts together chicken salad sandwiches with the help of one of her tenants. “At first I was worried about you talking to Carol,” she confesses. “But really, she’s the perfect one for you to talk to. She indicates what the struggle is. Somewhere in her mind, she wants more independence, but in the day-to-day realities of how her life trajectory has gone…”

She trails off, but doesn’t need to finish. The mental illnesses that tenants in Homes for Special Care deal with are not minor by any measure. Operators regularly struggle with where to draw the line when it comes to providing support for their tenants—when to let them live their own lives and make their own choices, and when to intervene because those choices are against the best interests and sometimes safety of the tenant.

Every month, tenants get about $140 from the Ministry of Health and Long-Term Care for personal spending. According to homeowners, many spend the allowance immediately. “It’s gone within 24 hours,” says Lisa Zavitz. Often, she says, she finds tenants lying on the sidewalk near their home, having defecated in the street after trips to Valu-mart on payday. “They eat so much their bodies can’t break it down.” Increased appetite is a common side effect of medication for schizophrenia, and “the medication pushes their addiction button.” She says one of her tenants drinks oil. “Within human rights, I can’t physically stop them from that, so I clean up the messes, I make sure they get bathed, I make sure the whole place has been bleached, and then I sit down and have the same conversation with them: ‘I’m here if you need help budgeting money. You can’t do this, this is bad for your system.’”

The Ministry of Health and Long-Term Care plans to increase tenants’ spending allowance to $500 per month, a move that every operator I spoke with opposes. Sarah put her stance on it simply: “Sometimes, them not having money can be one of their only controls.”

***

The homeowners and operators I spoke with are open, even enthusiastic, about giving more individualized care and independence to tenants, but they say they need more funding to do so safely and effectively. Many of the homes are now closing down—smaller ones have become too expensive to run, owners say.

“We’re not like small businesses, we can’t just increase our costs,” says Connie Evans, an owner and president of the Ontario Homes for Special Needs Association. “Empower the homeowner” is a maxim used by several Homes for Special Care operators who say they need more money from the province to survive. “The small homeowners have been struggling, they are not making any money,” says Rahim Charania, another operator.

Policy experts argue that the for-profit model of Homes for Special Care is one of its most fundamental flaws. “It provides an incentive for people making money to keep a stable pool in their house and to have attitudes to say that they can’t do any better,” says Nelson.

Sarah’s Home for Special Care is perhaps one of the best in the business, and not all homes are run like hers. “The one-on-one care, the home-like setting, making sure that they matter and are part of the family. We’re a family, and we’ll argue and bicker and everyone is entitled to that,” says Lisa, who guesses that 50 percent of homes could use significant improvements.

***

On a warm day in May I pull up to a building tucked away on a side street in downtown Toronto. This residence, which opened in 1994, is inconspicuously large with high ceilings and 20 private bedrooms each equipped with an ensuite four-piece bathroom. “This is the Cadillac of mental health housing,” says Janet Huang, the executive director of the non-profit housing program Pilot Place Society, who welcomes me at the door.

With just slightly more staffing than Homes for Special Care, this non-profit is known as one of the best ways to house people with mental illness. “Homes for Special Care went out of fashion, although they were the answer to a lot of things,” Janet says.

The program should not be abolished entirely, Janet says. “There are people who could do well there,” though, she says, it certainly shouldn’t be the only option.

At Pilot Place Society’s three Ontario residences, the philosophy is recovery. “We are re-training people for community living,” Janet explains. They’re taught the basics, like how to bathe and pick out an outfit. Some tenants are employed by alternative businesses as mail couriers and others as helpers in a cafe in the city. There is a Tenant Council run and led by the residents.

Even in this type of housing, where increased independence is an explicit, mandated goal, getting people to recover is difficult. Janet and her staff took at least a year to successfully train residents to go to the corner store next door unsupervised. One Pilot Place Society resident named Ivan showed up in 2009 from CAMH’s inpatient unit, where he says employees told him he could not cross the street because he’d previously been hit by a car. At Pilot Place Society, Janet pairs Ivan up with other residents to go on walks around the neighbourhood. “Here, we’re part of a society,” Ivan says, adding that he’s much happier than his days in the hospital. “I have freedom here.”

Perhaps Carol, the woman in Sarah’s house with the stable, intense gaze, would fare better living somewhere like Pilot Place Society. Or perhaps Sarah and the Homes for Special Care program are offering Carol just what she needs for her specific challenges and abilities.

Carol’s niece, one of her only surviving family members, is happy with the care her aunt gets at the Dutsch Residence. “Sarah has a routine, a grasp on these guys. Carol doesn’t seem happy there, but it’s a wonderful place,” she says. Is the embattled custodial housing program fundamentally and philosophically flawed, or is it in need of a serious fix? Sarah doesn’t know what, exactly, the Ministry’s modernization and the plans to change the program will ultimately mean for tenants.

“We’re all kind of scratching our heads going, are they losing something, or are they gaining something? I’m just anxious about caring for these people.”