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.

Illustration by Tobias Diuk

When my girlfriend of six years broke up with me by text, followed by a short call, I couldn’t comprehend it. It wasn’t grief, shock, or denial. My brain, damaged from 16 months of Long COVID, couldn’t read or write, splice voices from background noise, or parse words said fast enough to react. When our friends asked what happened, I couldn’t explain the literally, not just emotionally, incomprehensible.

Early media coverage of the virus’s neurocognitive impacts focused on smell and taste, driven by viral videos of patients unable to tell pickle juice from lemonade. But SARS-CoV-2 can affect every sense and most aspects of cognition. My experience was severe but not rare: impaired word recall and object recognition; executive functioning, such as following steps to do laundry; and spatial memory, even in my own apartment. Conversations were dream-like, disorienting, and difficult; technology use triggered sudden naps. The pandemic’s collective TV-watching, live-streaming era passed me by. My life became as quiet as I could make it, and all the more isolating.

Louise Cummings, a professor in the Department of English and Communication at Hong Kong Polytechnic University, says that “language is breaking down” in adults with Long COVID. “Even a short, slow-paced conversation can induce a severe flare-up of symptoms,” she says, “necessitating many days of rest in some cases.” In her 2023 study, participants reported difficulty finding words (93 percent), losing concentration when talking (89.6 percent), recalling what was said (65.4 percent), or understanding speech (38 percent). Conservative estimates of Long COVID incidence are at least 10 percent of infections, and neurocognitive symptoms are among the most common and longest lasting. But while other types of brain injury (e.g., from a stroke) may show on a static scan, Cummings says “the disruption to brain physiology in Long COVID is likely…more subtle.”

Studies that do show this disruption use specialized testing not available to most patients. A University of Waterloo study found reduced oxygen saturation in the prefrontal cortex during cognitive tasks. Oxygen is fundamental to brain functioning, implicated in fuel metabolism and neuron communication. Numerous studies, including two from the University of California, San Francisco and CAMH in Toronto, found inflammatory markers in the brain and cerebrospinal fluid, known to impact memory and mood.

When my hospital network opened a Long COVID clinic and I was seen virtually, 20 months post-infection, the cognitive rehab specialist recommended a maximum of 20 minutes per day of cognitive or screen activity. She said I’d likely never work again: my brain was irreparably damaged. Like most clinics, there were no neurologists, cardiologists, or infectious disease specialists, no diagnostics or prescriptions; only virtual patient education on adjusting to illness, social workers and dieticians, and a PDF handout on attention and memory I couldn’t read. To get treatment, I had to find my own specialists, including in private practice.

Desperate for distraction while bedridden, I could only handle instrumental music: nigunim (Jewish songs in lilting rounds of nonsense syllables) or small classical ensembles. Slowly, I added podcasts, listening for short stints without multitasking. My favourite hosts were always two intimates whose conversations felt like lounging after a dinner party. I’d let the social ambiance wash over me, an experience that violated public health policy. Even when I couldn’t handle watching closed-captioned TV, I listened to backlogs of “Witch, Please” (“a fortnightly podcast about the Harry Potter world”); official cast and crew pods for The Good Place and Hacks; recap shows like “Out on the Lanai;” and “Race Chaser” (“dedicated to the discussion, dissection and dissemination of every single episode of RuPaul’s Drag Race”). It helped to hear familiar voices describing familiar things without pressure to contribute, to practice comprehension and memory in a low-stakes environment.

Some formats felt more accessible, even rehabilitating. Hannah McGregor, program director of Simon Fraser University’s publishing program and co-host of “Witch, Please” with Marcelle Kosman, suggests this could be due to pedagogical principles built into good podcasting. “Core to teaching is repetition,” McGregor says. “You need to articulate things multiple times for them to resonate with people, and ideally, you will articulate them in multiple different ways.” Podcasts, like all serialized media, are “a balance of repetition and change,” she says, a structurally predictable format with cues like segment intros or musical transitions. “Witch, Please” revisits every book and movie through different theoretical frameworks, glancing deftly sideways from critical theory back into fiction like the best undergrad class you never took. It uses the explainer format, in which one host presents research to the other, which McGregor says models “the actual process of listening” through active listening noises and follow-up questions, making it easier to stay engaged, especially for my overloaded brain.

Big Dipper, executive producer at the Moguls of Media (MOM) Network, says that “Race Chaser’s” comforting balance of structure and improv is intentional, supported by guiding outlines and a timed four-segment format. “All the character, uniqueness, and what stands out…comes organically from [hosts, drag queens Willam and Alaska Thunderfuck] in conversation, but I give them a strong structure to hold onto so that they can really have freedom…to improv and talk shit.” The hosts riff on a vast pastiche repertoire of Drag Race, queer canon, and cult classics, both reverential and sardonic, vividly describing the action on screen and outfits from hair to heel.

Big Dipper says the format made queens “far more accessible to their fanbase….long-form, true personalities, no facade.” The podcast is a love letter to other media and mediums, not just in content but in style. The leisurely intros and outros come from Big Dipper’s theatrical background. “I structure the majority of our shows [like this]: the cold open, theme song, intro, and an outro to let the audience down gently.” Cummings says frameworks like these can be helpful. “If an interview has a set structure, you are able to use a mental template of how it will proceed, to facilitate comprehension,” she says, compensating for the lack of visual cues. The format is comforting, says Big Dipper, because “nothing is expected of the listener” and you can “let it wash over you.” Listening helped me rebuild memory retrieval pathways for sound and images.

For me, podcasts were patient companions who didn’t mind repeating themselves, and a descriptive medium when I couldn’t comprehend multimedia. They kept me company when I was too sick to leave the house, when in-person events were banned, and my community fell apart post-breakup.

Even now, three years into this, large Zoom meetings and dinner parties are still challenging and nightclubs are inconceivably inaccessible. But I can listen in on other people’s friendships while they “improv and talk shit,” and doing so has helped immensely as I relearn how to comprehend, remember, and connect with the world.

A First Nations-led initiative in Manitoba will receive $19 million from the federal government to set up much-needed diabetes-related foot care services in the communities. The initiative is vital considering numbers showing that First Nations experience diabetes at a rate 4.2 times higher than the general population, but 34 of the 63 nations in the province had no diabetes service.

In early 2017, pro-abortion activists across Canada celebrated when abortions became available in P.E.I. for the first time in 35 years. The new Women’s Wellness Program means women no longer have to travel off the island to access reproductive services.

But access to other health care services remains limited across the province. Nearly 7,000 Islanders are listed on the provincial patient registry waiting for a primary-care practitioner. Health PEI has announced a plan to match 3,000 people with a practitioner within the next year, but by that time, nearly 5,000 more will have joined the wait. Accessing care is especially difficult for rural residents. A 2016 report by Islandwide Hospital Access, a grassroots advocacy group, says some rural Islanders have to travel 30 to 90 minutes for emergency services. The report also claims the shortage of services results in further strain on larger hospitals’ emergency departments.

There too is a distinct lack of specialized services across the province as a whole. Patients are frequently forced to travel abroad to get the treatment they need. Last year, P.E.I. spent $47 million on out-of-province health care, the province’s second-largest health cost after Charlottetown’s Queen Elizabeth Hospital. And even when P.E.I. covers the financial burden of out-of-province medical trips, travel takes patients away from their families and support systems—all for care they should be able access closer to home.

Dr. Paul Caulford has had a busy and unusual year. Since November 2016, he’s seen an unprecedented volume of patients and treated a peculiarly high number of frostbite cases. Many of these visitors have travelled on foot from the United States, escaping the Trump administration’s anti-immigration agenda. As the co-founder of the Canadian Centre for Refugee and Immigrant Healthcare (CCRIHC), Caulford and his small team of volunteers are often the first people asylum seekers turn to when they arrive in southern Ontario.

Caulford, along with Jennifer D’Andrade, founded the clinic in 1999. While they intended to help undocumented migrants safely access health care (many avoid it for fear of being detained or deported), another objective was to fill the health care gap for sponsored refugees.

Government-assisted refugees and other refugee claimants in Canada access health care through the Interim Federal Health Program (IFH). “The problem is that a lot of places like walk-in clinics and medical offices won’t take IFH,” Caulford explains, because doctors aren’t required to sign on to the program. In many cases, refugees can only access health care through expensive emergency room visits.

“When we found out about this in 1999, we were shocked,” says Caulford. “We found thousands of people living and working in our community, going side by side with us to the parks with their children, but as soon as they get to the door for their own health care, it’s shut for them.”

The CCRIHC provides daytime and evening health care assistance to its many patients. The clinic had more than 3,000 patient visits last year—a number that continues to grow as Canada’s refugee health system remains stagnant yet increasingly in demand.

“It’s been very hard to get government-assisted funding for the clinic,” Caulford says. “We have a little bit of a grant that we use for some lab tests and X-rays but it runs out very early. There’s no money for rent, supplies, security, telephones, computers— what it takes to run an office.” All 30 volunteer doctors pool money together to help pay for the clinic from their own pockets.

“Canada is a compassionate nation with a humanitarian soul, and I’m proud of our country, and proud to be doing this,” says Caulford, who hopes the government will enforce a health care program that offers all refugees—documented or not—coverage for urgent circumstances. “But Canada has lived and profited from this dirty little secret. To have people working here, paying taxes here, but not giving them health care in return is shameful.”

Although Canada is often praised for its seemingly progressive health care system, it’s not perfect. This is particularly true for queer and trans people who are often mistreated by its antiquated process and mindset. The Remedy: Queer and Trans Voices on Health and Health Care, an anthology of essays from various LGBTQ authors, deconstructs why modern-day Canadian health care isn’t working for all—and calls for change in order to help LGBTQ communities thrive.

Through first-person narratives, we hear from gay men living with HIV; trans folk who are too often misgendered and treated without dignity at hospitals; a Black intersex man who has struggled to navigate the health care system his entire life; as well as a lesbian couple dealing with cancer. Each essay raises important issues, providing possible solutions to what they’d like to see change.

Despite Canada’s less-than-perfect health care system, The Remedy also gives readers a sense of hope. The anthology champions medical professionals and organizations doing amazing work for the community. In Toronto, we learn about Affirmation Decks; in northern Ontario we meet a pair of advocates who want to collaborate between LGBT2-SQ and medical communities in Sudbury; and in Seattle we’re introduced to the Q Card Project.

Each of these stories, paired with cute illustrations dispersed throughout the anthology, makes The Remedy accessible yet informative, and a source for healing and optimism. Dignity and proper health care are human rights—and The Remedy calls for a future we should all care about.

For our special 50th anniversary issue, Canada’s brightest, boldest, and most rebellious thinkers, doers, and creators share their best big ideas. Through ideas macro and micro, radical and everyday, we present 50 essays, think pieces, and calls to action. Picture: plans for sustainable food systems, radical legislation, revolutionary health care, a greener planet, Indigenous self-government, vibrant cities, safe spaces, peaceful collaboration, and more—we encouraged our writers to dream big, to hope, and to courageously share their ideas and wish lists for our collective better future. Here’s to another 50 years!

I’ve read a lot of hospital memoirs lately: anecdotes featuring shit and piss—stories that detail the bloody mess of having a body. I can see myself in them. It’s soothing to witness your own physical pain and trauma (and moments of hilarious bodily fluid explosions) mirrored back. As a disabled woman, I ache for community that normalizes my “abnormal” body.

At the same time, I often cringe. It’s a complicated cringe. I’m not grossed out. It’s more a cringe of fear. When I read about other sick and disabled people who stipulate that their bodies be respected and their truths be heard, I feel admiration, respect, and a certain kind of panic. It’s a (perhaps irrational)worry that good health care provision is a finite resource that will be taxed by too many of us asking, asking, asking.

Over the years my strained relationship with the Canadian health care complex has achieved a fine balance: I don’t ask for a lot but I firmly demand what I need. My strategy for self-advocacy when navigating the doctor’s office: wear a nice blouse. Speak calmly and know how to describe your pain. Don’t complain when they touch your body without asking first. My strategy is significantly bolstered by my white skin. My tactics are assisted by my expensive clothes. It matters that I am a cisgender woman. All the ways that I pass make it easier.

In Canada we are lucky to have access to health care and I am grateful. But still I long for more—for better. I dream of a future where our Canadian health care system is radically restructured. I want for health care to be truly accessible. I imagine a world where patients are recognized and trusted as holding expert knowledge concerning their own bodies.

In this dream world hospitals would be better funded. In this dream world health care practitioners would work less and have more space and time for each patient. Medical school would not only teach students how to care for the sick but also learn empathy. The medical understanding of the human experience would be intersectional. Imagine a world where your health care practitioner could acknowledge the physical implications of living in a white supremacist patriarchy, as well as understand the functionality of your liver. Imagine a tiered system where hospitals involved social service workers, counsellors, and peer support workers as well as nurses and doctors.

Imagine a world where disability or physical difference was not a problem to be solved, rectified, and rendered normal, but where we instead honoured our individual resilience. I want for a doctor’s office that can offer me relief, but still see me as strong. I want to take a page from all of those memoirs and confidently ask, ask, and ask. I want for my body to leak, sway, and take up space, and to demand no less for all of that.

Cover illustration by Nick Craine

WHEN MAURINA BEADLE WAS CARRYING HER SECOND CHILD 20 years ago, the doctors told her she should terminate her pregnancy. The fetus was showing signs of hydrocephalus, also known as “water on the brain.” As excess fluid builds up in the brain, it places abnormal amounts of pressure and stress on important regions, and can cause varying degrees of brain damage, including mental retardation, different forms of motor disability, cerebral palsy, and death. It didn’t dissuade Beadle. She gave birth to her son, Jeremy Meawasige, on December 9, 1994.

The doctors were right. Jeremy was eventually diagnosed with hydrocephalus, cerebral palsy, spinal curvature, and severe autism. He has required around-the-clock care since birth. He can’t walk on his own without the support of others, he can’t eat on his own, he is incontinent and needs to wear a diaper, and he isn’t able to speak or write. He has very limited means to communicate with others, and he doesn’t make eye contact with people he doesn’t know. Only those who are close to him, like his mother, can understand what he wants or needs from the sounds and movements he makes.

“When Jeremy slept,” says Beadle, “that’s when I took a sleep. Whenever he was awake, I was awake with him. And if he fell asleep in my arms, then I would fall asleep too.” Sometimes, he’s self-abusive. Once, when he was about 15, he repeatedly smashed his head against the wall so hard that he was in a coma for four days. Beadle says he looked like Sylvester Stallone coming out of a boxing match. The doctors told her they would have to drill a hole into his head to release the fluid build-up resulting from the trauma. Luckily, as they were preparing the operating room, Jeremy woke up from his coma, narrowly dodging the invasive surgery. Beadle also has another son, Jonavon, six years older than Jeremy. But taking care of her second son has been her full-time job since the day he was born.

While Jeremy was growing up, the family didn’t spend much time at home, not even during Christmas holidays. He was often ill and was hospitalized numerous times—too many to count. Beadle can’t remember going longer than one month between hospital trips. Jeremy’s immune system is extremely weak. When he catches something (a bacterium or virus that a healthy child could easily fight off) it could turn serious, requiring a hospital stay or even surgery. His shunt system, put in place to treat his hydrocephalus, is largely to blame. The long tube transfers the excess fluid in his brain to his abdominal cavity where it can be properly absorbed. An infection could travel to the shunt tubing, infecting it too. When this happens, surgeons have to remove the old shunt, clear the infection using antibiotics, and then put in a new shunt.

Every day, Beadle has to help Jeremy dress, shower, change diapers, and spoon feed him his meals. She also has to keep a vigilant eye on him to make sure he doesn’t hurt himself. She spends a lot of time singing with him, which she says is the one thing that always makes him smile and laugh. It has never been easy. Beadle and her two sons live on Pictou Landing First Nation reserve, a two-hour drive from the hospital in Halifax, called the IWK Health Centre. Beadle always took Jonavon with her on the long trips, both of them sleeping in a cot beside Jeremy during the extended hospital stays. In those early days, Beadle tried to get part-time help to take care of him. She would write to the local health centres to ask for support and fill out all the necessary forms, but help never came. Eventually, Beadle gave up hope. She carried on, as a single mother of two, doing the best she could to keep her sons happy and safe.

But everything changed in May 2010. At the age of 50, Beadle suffered a stroke that left half of her brain damaged. The doctors told her she might not be able to walk again, nor regain full movement on her right side. Beadle felt helpless, but was determined. She would walk again. And she did. She walked out of the rehabilitation facility and returned home after a month of hospitalization. But when she returned, she quickly realized she was not able to provide the care Jeremy needed while still recovering from her stroke. It was hard for both of them to accept. “He wanted me to snuggle with him and cuddle with him,” she says, “and I wasn’t able to do that.”

She needed help. But as an Aboriginal family living on a reserve, help was hard to get.

IF BEADLE AND HER FAMILY DIDN’T LIVE ON A RESERVE, GETTING home care and caregiving support would be a much easier process. She could have reached out to her provincial Disability Support Program. From there, the provincial program would do an assessment of their needs, and then provide the necessary financial support. As far as hassles go, it would only be a small one—and more importantly, there would be scant delay between contacting the program and receiving support.

Things are a lot more complicated when a person lives on a reserve. The federal government, rather than the provincial government, funds health and social services on reserves. The federal government provides funding through block contribution agreements to a reserve’s band council, which is the elected government of a particular First Nation—in Beadle’s case, the Pictou Landing First Nation.
The band council then decides how the money is spent. In theory, the band council is supposed to receive enough funding to provide care and services at a level similar to what is available to off-reserve residents in the same province. But problems arise when there simply isn’t enough money in the budget.

The person in charge of delivering health care services on Pictou Landing First Nation reserve is Philippa Pictou, the health director. When she found out about Beadle and Jeremy’s situation, she insisted he receive daily at-home care immediately, even though she knew it would quickly eat up the entire health budget. She hoped there would be a way to obtain extra funding and, in the meantime, asked the province of Nova Scotia to send a nurse to perform an assessment—she wanted to know what level of care the family would receive if they lived off-reserve. The assessment was performed in October 2010, after which Beadle’s 24/7-hour care was reduced to 8:30 a.m.–12:30 p.m during the week, and 24-hour care over the weekend. The care services still cost about $8,200 per month, nearly 80 percent of the band council’s entire monthly budget for personal and home care services. For a small reserve of 600 members, it was unsustainable.

Pictou asked the two federal departments responsible for funding home care, Indigenous and Northern Affairs Canada and Health Canada, to top up the band’s funding. But both departments denied her request and told her it was up to the band to properly budget for the extra costs. “It became clear,” says Pictou, “that Jeremy was already starting to get treated differently than if he was living off-reserve.” In 2012, Beadle and the Pictou Landing Band Council took the federal government to court, demanding the right to be treated equally and to receive the services band members needed—and deserved.

The decision to fight the federal government was easy for Beadle. She knew it was the right thing to do, not just for herself and her son, but also for all the First Nations children across Canada. And, it wasn’t just about equal treatment of children on- and off-reserve. Jeremy’s case connected to a wider issue that’s deeply gutted First Nations communities across Canada: the forced removal of First Nations children from their homes and communities, often as a direct result of low funding and services on reserve. The battle was going to set a legal precedent one way or another.

If Beadle and the band council won, it would give First Nations families a better chance in the future to access services at a level equal to their off-reserve counterparts. More children would be able to stay at home, instead of given up to foster care or institutions. If the federal government won, it meant current funding agreements with First Nations communities didn’t need to allow for exceptional circumstances that warranted additional funding. Everything would remain the same—if not worse—for First Nations families.

BEADLE SPEAKS WITH A SOFT YET EXCITED VOICE. SHE ISN’T ONE TO dominate a conversation. Her home on the reserve is a small, minimally-furnished bungalow, which she shares with both her sons. When I visited her, it was during the dead of winter in February, just ahead of a massive snowstorm. Everything seemed a little dreary. Houses on the reserve are spaced far apart—not like in wealthier Canadian neighbourhoods, where the space is for meticulously landscaped yards and gardens, but haphazardly, with unplowed snow-covered roads connecting them. Life is generally quiet for Beadle and her family, especially during the winter months. Going outside meant risking infections for Jeremy. The only time Beadle stepped outside the day I was there was to huddle in front of her door to smoke a quick cigarette.

The events post-stroke, she tells me, disrupted her family’s life, but also put a strain on the entire community. While looking for a way to relieve that strain, Beadle and Pictou discovered Jordan’s Principle. A child-first principle adopted by the House of Commons in a unanimous vote in 2007, its intention is to ensure jurisdictional disputes don’t cause First Nations children to experience delays, disruptions or denial of services available to other children. The principle is named after Jordan River Anderson, who was born in October 1999 on Manitoba’s Norway House Cree Nation reserve. Thanks to an extremely rare neuromuscular disorder called Carey-Fineman-Ziter Syndrome, Jordan spent the first two years of his life in a Winnipeg hospital, 800 kilometres away from his home. When he was two years old, the doctors decided he was ready to leave the hospital, provided he had special home-care services.

This led to a long fight between the provincial and federal governments over which was on the hook for the bill. They argued over high-cost items, such as home renovation needed for installing a wheelchair ramp, to very low-cost items, like a showerhead. The dispute lasted for over two years until 2005, when Jordan died in the hospital at five years old, having never spent a single day at home with his family. If Jordan were a child living off-reserve, the province would have immediately covered the costs to provide home-care for him.

The sad reality is, Jordan’s situation—like Jeremy’s—is not unique. In the same year Jordan died, a First Nations Child and Family Caring Society of Canada report found that across 12 First Nations child welfare agencies in Canada, 393 children faced denied or delayed services because of jurisdictional disputes. And, that’s just the tally from a handful of agencies—there are 108 in Canada. They’re all services that would be readily available to an off-reserve child. Jordan’s Principle was designed to stop the disparity. When the private member’s motion to adopt the principle was introduced, there was very little debate. Everyone agreed what happened to Jordan shouldn’t happen again. Before the vote, Conservative MP Steven Blaney, who spoke on behalf of the Conservative government, told the House that the feds were already working hard to “transform the commitment we make here today into a fact of daily life for First Nations parents and their children.”

Yet in 2011, four years after the historic vote, neither Beadle nor Pictou could find a single successful application of the principle in Canada. It seemed clear to them that Jordan’s Principle should apply to—and, therefore, help—Jeremy. Under it, the first governmental department a family approaches should foot the bill for necessary and eligible care and services. If the principle had been properly implemented in Jeremy’s situation, the provincial government should have provided services immediately after its nurse’s assessment of the family. It could negotiate with the federal government over costs and reimbursement later, on its own, in the background.

Devastatingly, after many meetings with provincial and federal officials to discuss Jeremy’s case, the federal official in charge of implementing Jordan’s Principle in Atlantic Canada decided it didn’t apply. Both the province and the federal government agreed the amount of care requested exceeded the provincial normative standard of care, a maximum of $2,200 per month. Thus, since the two governments weren’t technically in dispute, it wasn’t a Jordan’s Principle case—help hinged on the two governments battling over costs. As an alternative, the governments suggested Beadle place Jeremy into a longterm institutional care facility. They promised all the costs of his care would be fully covered by either the federal or provincial government. The estimated daily cost of institutionalized care for Jeremy was $350 per day. The cost to keep Jeremy at home was roughly $270 per day. Beadle was horrified. It felt like the government would rather spend more money to take Jeremy away than to spend less to help her keep him home. There was no way she would give up her son. Court was her last chance to save him—and to broaden Jordan’s Principle so it could finally help children on reserves.

AT THE END OF MARCH 2011, THE NOVA SCOTIA SUPREME COURT ruled on a case similar to Beadle’s. It involved a Nova Scotia off-reserve resident named Brian Boudreau who required 24-hour care. Unfortunately, his in-home care was capped at $2,200 per month—the same cap Jeremy faced. Boudreau was fighting to have the funding cap abolished. In the end, a judge ruled in favour of Boudreau, finding the monthly cap unlawful. The judge ruled the cap contravened the Nova Scotia Social Assistance Act, as well as the province’s Direct Family Support Policy from 2006, which specifically states that funding exceeding $2,200 per month may be granted in “exceptional circumstances.”

When Pictou heard about Boudreau’s win on the radio, she believed she’d found the smoking gun she needed to get Jeremy’s care covered. She shared the Boudreau decision with the federal official in charge of Jeremy’s files, but the government still insisted Jordan’s Principle didn’t apply. Unwilling to give up, Pictou contacted Cindy Blackstock, executive director of the First Nations Child and Family Caring Society. She thought maybe Blackstock, who has been at the forefront of advocating for Jordan’s Principle since 2005, could suggest options. Certainly, Blackstock was outraged. How could a government deny Jeremy the care and support he needed to stay at home with his mother, but willingly offer a more expensive solution to institutionalize him? “That just doesn’t make sense to me at all,” says Blackstock. “I can’t square that circle.”

She’s spent the last decade working to close the gap between what children get on- versus off-reserve. For Blackstock, the government’s failure to properly implement Jordan’s Principle is a symptom of a much greater problem facing First Nations children across Canada. Prior to her current role, Blackstock was a child protection worker on- and off-reserve in B.C. During that time, she became exceedingly aware of the differences in care and services available to the children on either side of a reserve line. She felt it wasn’t a problem of remoteness, but systemic racism against First Nations. After all, inequality existed even in First Nations reserves near big cities. “Just stepping across that imaginary line was like going thousands and thousands of miles away,” she says, referencing a Squamish First Nation reserve close to North Vancouver. “I could not believe how restrictive the services were.”

This belief has led to her own legal battle. In February 2007, the First Nations Child and Family Caring Society of Canada and the Assembly of First Nations launched a human rights complaint against the federal government. It’s the first time in history a country has been held accountable for its present day actions towards an Indigenous population. The complaint alleged the Canadian government discriminates against First Nations children like Jordan and Jeremy by providing them with less child welfare funding than other children in the country. The government’s own documents estimate the funding gap between on- and off-reserve child welfare services is at anywhere between 22–34 percent. Hearings for the case took place in front of a three-person panel at the Canadian Human Rights Tribunal and concluded in October 2014.

At the crux of the tribunal hearings: that the Canadian government provided flawed and unequal services to First Nations children, and that it failed to implement Jordan’s Principle. The ripple effect, argued Blackstock and her allies, meant First Nations families were often forced to surrender their children to foster care or institutions. First Nations children are 12 times more likely to be placed in foster care than non-Indigenous children. They account for 30–40 percent of all Canadian children in child welfare care, even though they make up only five percent of the Canadian child population. What Blackstock wanted was the same thing Beadle wanted: the right and ability to keep First Nations children at home and in their communities.

In the end, Beadle’s case reached its conclusion before Blackstock’s. After spending $300,000 to win its case, the federal government lost. The court ruled in favour of Beadle and the band council in April 2013. The judge agreed with Beadle that the federal government made the wrong judgement on Jeremy’s case, and that Jordan’s Principle did apply. The provincial government, as dictated by the Social Assistance Act, would, in fact, have to cover Jeremy’s care costs if he lived off-reserve. And thus, the federal government should cover those costs to ensure equality for First Nations children living on a reserve. The court ordered the federal government to reimburse the band council for all legal costs, the fees for the services Jeremy had been receiving since Beadle suffered her stroke, and to cover all future costs related to his care.

It was the first time Jordan’s Principle was successfully applied in Canada. And the only time. The Canadian government has made it virtually impossible for families to apply for Jordan’s Principle. First, a narrow definition of qualification exists. A child must have multiple complex health care needs—not just one or two, but many. Second, there’s still the sticking issue of what constitutes a dispute and who it is that must be feuding. That is, if two federal departments, like Health Canada and Indigenous Affairs, couldn’t agree over which should cover the costs of a service, the principle would not apply. And finally, there is just too much red tape to access services using the principle. Even though Beadle won against the government and now has the support she needs to keep Jeremy home, she knows the fight isn’t over. She thinks about how Jordan River Anderson died and knows that he is dead because the principle that’s his namesake didn’t exist when he was alive. She wonders if it would have helped him even if it did.

AFTER SEVEN YEARS AND NUMEROUS EMOTIONAL TESTIMONIES across Canada, the Indian Residential Schools Truth and Reconciliation Commission published an executive summary of its final report in June 2015. Number one on its list of calls-to-action was to reduce the number of Aboriginal children in care. Number three was to fully implement Jordan’s Principle. The statement was clear: the inequality faced by children and families living on reserves today perpetuates the horrific legacy of Indian Residential Schools.

Seven months following its release, at the end of nine long years and more than $5-million later, the Human Rights Tribunal also released its ruling on Blackstock’s case. On January 26, 2016, it found the Canadian government racially discriminated against 163,000 First Nations children. It ordered the government to reform its First Nations Child and Family Services program so that its child and family welfare agencies are provided with the same level of funding and resources as its provincial counterparts. It also ordered the government to “cease applying its narrow definition of Jordan’s Principle” and “immediately implement the full meaning and scope of Jordan’s Principle.”

Indigenous Affairs Minister Carolyn Bennett spoke to reporters the day the Tribunal released its decision. She said her department will move quickly to start coming up with solutions and, in doing so, will be working closely with First Nations communities and the Assembly of First Nations. She also said there will be a proper needs assessment done in order to determine how much money is required to reform First Nations child-welfare programs. “My job,” she told media, “is to go forward and fix these things.”

This is the news that Blackstock, Beadle, and all the other advocates for First Nations children across the country have been waiting for—a wait that has spanned decades, and involved years of hard work. Yet, although there has been a lot of excitement rippling through First Nations communities across Canada, it has been accompanied by a certain level of skepticism. It will take years to tell whether the ruling will actually change the realities of First Nations children and families. If it does, Canadians should see the number of First Nations children in foster care or institutions fall to a level that is proportionate to their population size.

Recognition of the government’s discriminatory policies against First Nations children alone does not create change. The government can continue to make apology after apology for its treatment of First Nations children, but that also does not lead to positive change. It will take proactive action and continual pressure on governments to make the changes First Nations children need. After spending so many years battling with the government, Blackstock knows this all too well. She knows the road ahead will not be a straightforward one. But she has a clear vision for the future that she will give everything she has to attain: “I want to see a generation of First Nations children that don’t have to recover from their childhoods, and I want to see a generation of non-Aboriginal children who grow up healthy and proud, and never have to say sorry for the treatment of First Nations kids again.”

This policy will prevent doctors from providing or denying health care, “on the on the grounds of race, ancestry, place of origin, colour, ethnic origin, citizenship, creed, sex, sexual orientation, gender identity, gender expression, age, marital status, family status or disability.” (In further it’s-about-time-news, gender identity and gender expression are newly protected grounds of discrimination under the Ontario Human Rights Code.)

In addition to having to refer patients elsewhere (in other words, to doctors who don’t decide who is and isn’t morally worthy of care), doctors will have to explain to their patients, directly and with sensitivity, why they are not willing to recognize things like women’s reproductive rights.

The policy reads: “While the Charter entitles physicians to limit the health services they provide on moral or religious grounds, this cannot impede, either directly or indirectly, access to care for existing patients, or those seeking to become patients.”

Um, how has this not happened yet? How is this even a thing?

I was naive enough to think the primary concern of health care professionals was the health of their patients. But this is clearly not the case—and some medical professionals appear upset their personal beliefs can no longer trump proper care.

Take, for instance, the Christian Medical and Dental Society of Canada. The organization, whose members take pride in what they believe to be moral integrity, held a press conference on the March 25 to announce it has filed an application asking the court to realize this new policy breaches sections of the Canadian Charter of Rights and Freedoms. As reported by the Toronto Star, Health Minister Eric Hoskins recently told reporters: “They’ve been given an alternative. None of this is forcing anything . . . all that’s required of them is providing timely access to another health care professional.”

But to provide such access would be to value reproductive rights—and that’s always been a scary thing for some people, and too often it’s those same people who are in power.

A former This intern, Hillary Di Menna is in her first year of the gender and women’s studies program at York University. She also maintains an online feminist resource directory, FIRE- Feminist Internet Resource Exchange.

Alana Kronstal's new public awareness campaign aims to cut Nunavut's sky-high smoking rates.

On the streets of Iqaluit, cheery Alana Kronstal is known as “the tobacco lady.” Young and old, everyone seems to know the 31-year-old, who is leading the charge against smoking in Nunavut, home of the highest smoking rates in Canada. “Nowhere in Canada has a campaign been launched starting with such a majority of smokers,” Kronstal says. “We’re trying to do something that hasn’t been done yet.”

The statistics are staggering when compared to the rest of the country: according to Statistics Canada, 53 percent of the Nunavut population smokes and private studies cite numbers as high as 70 percent among the territory’s predominantly Inuit population. Children as young as two pick butts off the street to imitate their parents. Studies show up to 80 percent of the territory’s pregnant women smoke.

Luckily for the anti-smoking faction, the federal government has granted Kronstal and her team $700,000 for a new public awareness campaign. Tentatively called Tobacco Has No Place Here, the PSA will focus on challenging the cultural norm of smoking in Nunavut. Kronstal’s team has hired two firms (one local) to grab the territory’s attention through social media buzz, YouTube vignettes, community feasts during the campaign’s rollout in January, an art installation in Iqaluit, and more.

“We’re a small community spread over a vast landscape. People know each other well,” says Kronstal, who has worked on smaller-scale campaigns in the Northwest Territories. “If we share personal stories, put a face to this issue, celebrate individuals who’ve successfully quit smoking, we’re getting somewhere.”

While sky-high lung cancer and tuberculosis rates are often overshadowed by Nunavut’s other struggles—high suicide rates, substance abuse, isolation, and poverty—Kronstal believes her campaign can change lives: “It’s having a very real impact on people’s health and the life expectancy of an entire population.”

Nunavut’s campaign is currently partially funded under the Federal Tobacco Control Strategy. Since the strategy launched 10 years ago, nationwide smoking rates have dropped to 21 percent, leaving the government to wonder if it still needs to invest in getting people to quit. The funding strategy is currently up for renewal, and Kronstal isn’t sure what will happen in Nunavut if it’s canned. “Is it a done deal now? Obviously for some of the provinces, the issue [of smoking] has changed,” she says. “But for people in Nunavut, it’s not a dead issue. It’s not an issue that’s been solved yet.”