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 Today, they are criticized for offering outdated and misguided support to vulnerable people.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.”

For more than half my life, someone has been trying to kill me.

That someone is me.

The first time I considered ending my life, I was eight or nine years old, living in a rented house with my father and brother in Owen Sound, Ont. My mother had moved out years earlier, after my father tried to stab her; he had started directing his misogyny at me instead. We had just watched The Towering Inferno, an early-1970s drama about a fire in a skyscraper. My brother described how he would climb balconies and elevator shafts to safety, and I thought: I’d just jump.

I knew I shouldn’t say it out loud, that the thought was somehow shameful, but it seemed clear to me that there are better and worse ways to die. I couldn’t see a good answer to the question, “Why not?”

Karen Letofsky, board president at the Canadian Association for Suicide Prevention (CASP), was not surprised to hear this. “There is a lot of social ambiguity around suicide,” she says. Much of what we think we know about suicide is based on social mythology, which creates barriers to the honest conversations Letofsky says people who attempt suicide need to have.

Yvonne Bergmans also emphasizes the importance of talking about suicidal thoughts. Bergmans is a CASP board member and suicide intervention consultant at the University of Toronto’s Arthur Sommer Rotenberg Chair in Suicide and Depression Studies Program at St. Michael’s Hospital in Toronto. She says suicide attempts and suicidal ideations speak to a “great, deep pain: that hurt where there’s a story being written about ‘I can’t survive this’ or ‘I need to end this.’”

In our discussions about suicide, both women say our country’s mental health system is under-resourced and prioritizes crisis over long-term support. Its uneven structure leaves it poorly equipped to help survivors do what we most need to: articulate and understand the stories behind our suicide attempts. And those stories matter—hearing them helps demythologize suicide, so we can understand and address it as a social problem.

I grew up in poverty, in an abusive home. I learned early in life that my physical safety and bodily autonomy were not guaranteed, that I had little control over what happened to me, and that being killed was a real possibility. My earliest suicidal thoughts aren’t about giving up. They’re about regaining control: If I can’t choose not to die, I’ll settle for choosing how to die.

***

Suicidal ideation was a secret I kept throughout my childhood. Even if there had been someone for me to share my feelings with, I didn’t have language to do so. Bergmans says this is a common problem. About 80 percent of her clients experience alexithymia, or an inability to identify and describe their emotions.

“A lot of folks can only talk about how they need ‘it’ to go away, without any language to understand what ‘it’ might be,” she explains: “The emotional literacy to be able to say, ‘I’m so angry,’ or ‘I’m so frustrated,’ or ‘I’m so lonely,’ or ‘I’m so hurt’ just doesn’t exist.”

Unable to communicate our feelings with words, people who attempt suicide learn to communicate with behaviour instead. I was 16 the first time I acted on suicidal thoughts. While I didn’t attempt suicide that day, I made a detailed plan: I was going to slit my wrists and then hang myself from the railing above the stairs in my foster home. My hanging body would block my foster parents’ path to the garage—they would have no choice but to acknowledge my pain. The idea scared me; that it seemed inevitable scared me more.

I confessed my plan in an online chatroom for people with depression, and someone called the cops. That was the first of many arrests under Ontario’s Mental Health Act—often referred to as “being formed” because there is a form the arresting officer or doctor fills out to require you to submit to psychiatric assessment.

The hospital discharged me back to my foster home the following morning.

The next year, I began struggling to determine what was real. My mind battered me with thoughts about scooping out my eyes, splitting open my abdomen and removing my uterus, cutting off my hands because they were being operated by someone else. I now have a word for what was happening to me—dissociation—but I didn’t then. I overdosed and wound up in the hospital again. Once again, I was discharged with limited follow-up. In these and other suicide attempts throughout my teens and 20s, I was telling a story, whether anyone wanted to hear it or not: I’ve got good reasons to feel this angry, and I demand to be heard.

Bergmans says it’s common to feel isolated after a suicide attempt: “Even when people are in crisis, their experience with the mental health system is often, ‘let’s find a diagnosis, try to medicate, and send them on their way.’ And what gets missed is the trauma of the experience that somebody has in attempting suicide.” The problem is both interpersonal and systemic. In a crisis, a person with suicidal thoughts can present themselves at the emergency room or call a suicide hotline and get immediate care. But, argues Letofsky, “once the crisis has passed, there really aren’t many resources. That compounds the problem.”

One area where we see the mental health system’s “crisis-driven service orientation” is in the programming that attempts to respond to youth suicides and attempts, such as the suicide crisis in Canada’s Northern Indigenous communities. “Most of the resources are front-ended and applied at the time of crisis,” Letofsky says, “and then you never hear again about that story or its longer-term impact.”

Indigenous people in Canada live with the trauma of ongoing genocide, a history that includes over-representation in the foster care system, in prisons, in poverty, and among suicide deaths. While Indigenous people are over-burdened with trauma that demands to be heard, the mental health system serving them is even more under-resourced than in the rest of Canada.

Makwa is an Indigenous social worker and mother of two from Sault Ste. Marie, Ont. Intergenerational trauma has shaped the experience of suicide for her and her daughter, Nimkii. (Both names and their location have been changed to protect their identities.)

Makwa’s mother, an Indian day school survivor, struggled throughout her life with self-harm, suicide attempts, and a substance use disorder, and Makwa and her siblings were apprehended by Children’s Aid when she was a baby. The first time Makwa attempted suicide, she was nine years old. She overdosed on acetaminophen in her foster home, thinking that if she died, she could leave the home.

By the time she was 11, Makwa was regularly self-harming. Each episode led to another crisis call: police, paramedics, hospitals, new foster homes, group homes when the foster homes would no longer take her. Sometimes, the hospital or jail Makwa was held in couldn’t discharge her because she had nowhere to go. Her sense that the system was tired of dealing with her crises left her “feeling even more worthless.” Eventually, a guard from one of Makwa’s detention facilities agreed to foster her.

Makwa developed a substance use disorder in her late teens, and when she aged out of foster care at 17, she was pregnant with Nimkii. Nimkii’s father, also a child welfare system survivor, used substances and abused Makwa. They lost custody of Nimkii and their infant son after Makwa, reeling from an episode of domestic violence, slit her wrists.

To be able to parent Nimkii and her brother, Makwa needed to change. She left her abusive partner, overcame her substance use disorder, went back to school, sought mental health treatment, and regained custody of her children. But as Nimkii entered her teenage years, Makwa saw familiar behaviour in her daughter: Nimkii began to self-harm, attempted suicide, and assaulted others.

For years, Nimkii’s only consistent support was Makwa. Makwa believed Nimkii needed residential treatment, and she knew being a child in the foster care system would open doors to treatment that she couldn’t afford. Makwa reluctantly agreed to a temporary care order with Children’s Aid, in hopes of getting Nimkii into the Roberts/Smart Youth Mental Health Centre in Ottawa. Nimkii eventually got into treatment, but at an enormous cost. She was placed into foster care. Like Makwa, she bounced between group homes, hospitals, and jails. She began using substances. Her behaviours worsened, and her criminal charges began to pile up. She ran away and was sexually assaulted. In the end, it took a year and a half to get Nimkii into treatment, and Makwa had to sign her parental rights away to do it.

Jane, a Barrie, Ont., high school teacher whose name and location have been changed to protect her job, also feels stuck in a repetitive cycle of crisis care. “When I was in crisis,” she explains, “I was able to talk one-on-one with a nurse, and they gave me phone numbers and set up initial appointments, but after that, I was on my own,” she says. Jane feels that, once the crisis is over, nobody cares whether she seeks treatment.

Both Makwa and Jane have had their parenting abilities questioned because of their mental illnesses. When Nimkii was released from residential treatment and returned to Makwa’s home, Children’s Aid remained involved. Their file was finally closed in November 2017, but it was reopened in January when Nimkii had an episode that required Makwa to call police. Most recently, Children’s Aid cited Nimkii’s mental illness as a reason to deny Makwa kinship care of another family member.

For Jane, the call from Children’s Aid came after her husband discussed suicide with a psychiatrist. In Barrie, the mental health system is so under-resourced that most patients can receive only a one-time assessment from a psychiatrist. Unfamiliar with Jane’s family, the psychiatrist concluded that two parents with the potential to self-harm constituted a risk to their children and reported them to Children’s Aid. She never considered that Jane and her family could find a way to cope with the risk of suicide.

Bergmans’s research found that even when follow-up support is offered to survivors, the conversation focuses on changing behaviour, not understanding emotions. One of Bergmans’s clients described behavioural therapies as “putting a doily on top of a pile of shit; there’s a pretty doily there now, but it still stinks.” Jane agrees: “As long as you’re making a valiant effort to fix your behaviour, people are more comfortable with that than with ‘this is who I am, this is how I am, this is how I think.’”

***

Sarah at an Athabasca University award ceremony in Toronto in 2013. Photo courtesy of photographer Janyce Mann.

Today, there are efforts to change that mode of thinking. Bergmans started trying to change the system in 1999, when her first therapy group for suicide attempt survivors in Toronto began, using an established intervention model that remains popular for treating suicidal individuals. But Bergmans’s eight group participants weren’t finding the therapy useful. So Bergmans adapted the group, working with survivors to build on academic research and on Bergmans’s experience working with children and youth. Together, they developed a program that “targeted the key areas for suicidality—safety, emotions, problem-solving, and interpersonal relationships.”

Bergmans’s intervention model lays out the core concepts participants use to understand the stories behind their attempts. The program includes 20 weeks of group therapy, during which participants also receive one-on-one support to process their learning and emotions. The challenge for participants is not to simply change their behaviour, as suggested in typical therapy models, but to understand it. Bergmans’s technique is in use at hospitals and community mental health centres in southern Ontario, including St. Michael’s Hospital, where 433 people have participated in the therapy. In fact, 121 of them have returned to complete it a second time.

Despite the success of Bergmans’s model, the Canadian mental health system is ill-prepared for widespread adoption of such resource-heavy methods. At St. Mike’s, Bergmans’s group participants all have one-on-one support. Other groups employ paid part-time staff, or they add the group to the workload of existing staff. It’s also a program in which service providers must become comfortable with risk—participants must feel safe discussing their suicidal thoughts and mental health challenges. In the risk-averse bureaucracy of the system, that’s not something health care workers are trained to do.

***

By 2013, I had scraped my way through a three-year Bachelor of Arts program at Toronto’s York University and made it into a graduate program in St. Catharines, Ont., but I had stopped coping. I still lived in poverty. I was raped two years prior, exacerbating my depression, anxiety, and gory, vivid nightmares—symptoms that would eventually be diagnosed as Post-Traumatic Stress Disorder. I was using opioids to cope with constant anger, sadness, and existential terror. There was nowhere, nothing that felt safe. A doctor at the walk-in clinic gave me a couple months’ supply of Cymbalta and sent me home. I took them all and texted goodbye to a friend.

This time, the hospital kept me. I spent 10 days in the Niagara Health system’s new mental health unit. They offered me group therapy, but the idea of explaining why I was so fucked up to strangers, doctors, and social workers sounded like torture. I played Uno with my friend when he came to visit, staring blankly across the room, dazed by the drugs I had poisoned myself with, while he dealt and nudged me to take my turns. I was discharged abruptly when a male patient grabbed me and tried to kiss me. Sometimes the story is just this: This story sucks.

But when I was discharged, I had a plan for follow-up. I would see a case manager at the Niagara branch of the Canadian Mental Health Association (CMHA), and I had an intake appointment at Quest, a community health centre in St. Catharines that specializes in providing health care to poor people, people with mental illnesses, and drug users.

My substance use disorder, which had been developing over years of increased use of OxyContin, heroin, and cocaine, worsened and eventually imploded. I often found the mental health system hostile, invasive, or outright harmful. Over the next three years, I was hospitalized nine more times, sometimes because I voluntarily presented at the ER in crisis, and others because I was apprehended under the Mental Health Act. But there were safe havens: a short-term crisis shelter at the CMHA, daily visits to a pharmacy for addiction medication, weekly visits from my case manager, monthly visits to the doctor. When I had suicidal thoughts, I brought them to people I trusted, who were knowledgeable about my mental illnesses, honest about what they thought would help, and consistent in these behaviours. I was learning to write another story: Slamming my head against this wall is exhausting. You slam it for me for a while.

None of my health care providers was consulted about that metaphor. And it’s hard, I imagine, for anyone who has never considered suicide to conceptualize such violence as therapeutic. It is absurd to crawl through a maze of bureaucracy and stigma, looking for someone to help me bash my drug-addled, self-destructive brains out. Why not just stop slamming my head into the wall? Finally, I was learning how to answer, “Why not?”

***

One way or another stories demand to be told to completion. At worst, these stories end in death. The key to reducing the number of suicide deaths is listening to the stories with alternate endings.

Although I still think about suicide most days, my last suicide attempt was in 2014. It took three years to find a combination of medications and therapy to keep me sane. By the fall of 2016, my mental health was stable enough that I was able to stop using drugs. Last year, when I returned to writing, art, activism, and community organizing, I realized I felt more like myself. Next year, I’m considering returning to graduate school.

Working with the Mental Health Commission of Canada, CASP has developed toolkits to support suicide attempt survivors. What’s important, Letofsky says, is being honest about the situation. Often, family and friends of suicide attempt survivors are afraid of saying the wrong thing. Letofsky advises support persons to begin by asking the survivor to tell their story: “What do I need to know? What do you need from me to help you stay safe?”

Jane’s Children’s Aid worker agreed that she and her husband pose no harm to their children and closed their file. The experience was stressful for Jane and for her eight-year-old daughter, who was recently diagnosed with an anxiety disorder. The ordeal had a chilling effect on Jane’s willingness to seek treatment. “All this experience has done for me,” she says, “is create and solidify more distrust in the system.”

Makwa works to help other Indigenous people navigate the mental health system and practises her Anishinaabe culture at home. Nimkii is stable and has returned to her mother’s home. She receives treatment at a community health centre for Indigenous women and sees a psychiatrist. They spend hours making jewelry together. While Makwa is afraid of what will happen when her daughter has to face the hospitals, community, and police on her own, she is also aware, from her own recovery, that her culture and traditions provide comfort and guidance. Decolonization is a healing practice.

In Bergmans’s therapy groups, suicide attempt survivors do the hard work of understanding their own stories. They make safety plans not for “what if” their suicidal ideations return, but “even if” they do. How will they manage their turmoil as safely as possible? How will they cope with suicidal thoughts that might never go away?

Suicide is scary, and a magic formula for answering those questions would be very reassuring. But there isn’t one. The best I can offer is this: This story has barely begun.

IF YOU NEED HELP, HERE ARE SOME RESOURCES ACROSS THE COUNTRY TO CONSIDER:

CANADA SUICIDE PREVENTION SERVICE:
By phone: 1.833.456.4566
By text: 45645
Online: crisisservicescanada.ca

KIDS HELP PHONE: 1.800.668.6868

FOR RESOURCES IN YOUR PROVINCE OR TERRITORY: yourlifecounts.org
READ MORE ABOUT SUICIDE PREVENTION: suicideprevention.ca

Years ago, walking through downtown Ottawa made Amanda Rocheleau anxious. As a social worker at The Ottawa Mission, one of the city’s largest homeless shelters, she knew almost every homeless person by name, and they knew hers. She listened to their stories every day—of childhood abuse, neglect, struggles with addiction and mental disorders. It didn’t feel right, she thought, to let herself stroll along carefree. “I used to laugh as I watched people walk through Rideau Centre and down the street with their shopping bags and big smiles on their faces,” Rocheleau, who has lived in the city since 2002, says. “And I would think, ‘You’re so oblivious to what is happening right around the corner, but I know.’”

Rocheleau, only in her late 20s by that point, was beyond burnt out. She was almost a decade in to her career with three young children at home, and the emotionally taxing work was wearing on her. Her immune system was weak; she suffered pneumonia, two kidney infections, and constantly felt exhausted. Traumas from her job began to seep into her personal life—when her son had his first male teacher, it triggered skepticism; she couldn’t stop thinking about the countless clients she knew who were abused by male authority figures.

Something had to change. But when she sought help and answers, resources were either unhelpful or nonexistent. So, in her exhaustion-addled state, Rocheleau did her own research. Slowly, she found the language to describe what was happening to her. Burnout: a state of total physical and mental exhaustion caused by prolonged exposure to stress. Vicarious trauma: a slow absorption of traumatic information that causes unwarranted hypersensitivity and anxiety. Compassion fatigue: a condition resulting from untreated burnout and vicarious trauma that affects your capacity to feel empathy. “It’s this gradual erosion of your compassion,” she says. “And compassion is the fuel that keeps social workers going.”

Rocheleau was experiencing the trifecta of psychological hazards potent in social work. And she is far from alone. A 2009 paper published in the Canadian Social Work Review, referencing a 2006 study that surveyed more than 1,000 Ontario social workers, found over 60 percent reported stress in their workplace; about 40 percent indicated feelings of depression and frequent illness. Despite difficult working conditions and low wages, the study concluded that the majority of social workers remained committed to providing care, “even if it contributes to their own exploitation.”

In the eight years since, research across the field suggests those working conditions haven’t gotten easier. Wages haven’t caught up with the cost of living. And yet social workers remain willing to stretch themselves dangerously thin. This can have a domino effect that hits vulnerable populations the hardest. The national conversation about mental health is growing, but effective resources for those on the front lines of everyday crises remain sparse.

***

Many of us have probably encountered a social worker at some point in our lives. They’re embedded in many major institutions: schools, prisons, hospitals, and in our communities, providing counselling, supporting youth, working in shelters, writing policy, and advocating for child welfare. A defining feature of the profession is providing support; identifying the services people need, and connecting them to those services.

But when it comes to supporting social workers, many find the options lacking, ineffective, or downright unavailable. Anna Przednowek, a PhD candidate in social work at Carleton University in Ottawa with more than a decade of experience in the developmental services field, says strategies she’s heard of to address psychological hazards for social workers are largely surface-level. The conversation, she says, is always about selfcare, like taking a hot bath or practising “mindfulness.”

Przednowek says these quick-fix strategies aren’t practical. Throughout her career, she’s seen how many jobs in her field are shifting from stable and salaried to more precarious, lower-paid contracts without benefits. Those jobs make it difficult to take sick days or afford a private counsellor. Couple that with service conditions where there is a reduction in service funding and shifting expectations that families will provide the bulk of care for those in need, and social workers end up working in high-intensity conditions that put them at risk of mental health challenges. “The support is shrinking and we’re being asked to do more with less all the time,” Przednowek says. “And then we’re just supposed to manage our anxiety with mindfulness?”

Meanwhile, social workers unintentionally perpetuate this flawed system by pushing themselves far beyond what is expected, according to Sarah Pekeles, a former master’s student at Carleton’s social work program who did placement work for her Bachelor of Social Work in Surrey, B.C. They are willing to work 50 hours a week instead of the mandated 35, knowing they won’t be paid overtime. Or check their email at 2 a.m., worried about what may have happened overnight to one of the children on their caseload. Or buy coffee and sandwiches and deodorant for their clients, knowing it will never be reimbursed.

Research only amplifies these concerns: A 2006 “quality of work life” survey conducted by the Ontario Association of Social Workers found many workers feel undervalued because they often make significantly less money than those in adjacent professions, such as nurses or psychologists. A joint research project by a U.K.-based community care organization and the public service union UNISON found this March that of the more than 2,000 social workers surveyed, 80 percent reported that they felt emotional distress every day in their work, and nearly half felt they were being pushed to the limit by the number of clients and caseloads they had been assigned. And an overall review of research on burnout in social work from the University of Queensland in 2002 reported that across the board, social work is “a profession that is at high risk of stress and burnout.”

Pekeles says scant resources and the concentration of vulnerable populations leads to a staggering number of cases at once—in child protection services, caseloads can sometimes be upwards of 40 per worker, when the benchmark is usually about 25. This has a direct impact on children, she says, because critical cases involving them can slip through the cracks when workers are overwhelmed and can’t keep up with their workload. “You feel deeply responsible if something happens to one of the kids on your caseload,” Pekeles says. “It’s a huge risk situation.”

It’s well known in social work circles that child protection has some of the highest turnover rates in the field—in Pekeles’ experience, the average time spent in it is about two years. In the first six months of Pekeles’ career, one co-worker who had started alongside her had to take stress leave, and another later went on permanent leave due to anxiety and post-traumatic stress disorder related to the job. Pekeles wasn’t surprised by this—separating yourself from the work can feel impossible. “You try, right, because that’s what everybody tells you to do,” she says. “But you can’t.”

Jaime Hobbs, a social worker currently completing a placement in Alberta for her Master of Social Work, also experienced these issues firsthand. The Nova Scotia native worked in a hospital for sick children for nearly a decade, and witnessing the inequity in how children accessed resources was one of the most difficult parts of her job. Since many charities for sick children tend to focus on well-known illnesses, such as heart disease or cancer, Hobbs says children with more complex or rare health problems are often left out—and people in her position are usually the ones dealing with the fallout.

“The [charities] have events to fundraise money for these kids who are in the hospital, like raising money for their parking passes—but it’s only for a specific group of kids,” she says. “Meanwhile, I’m going into one room and I’m like, ‘Oh, you have this diagnosis therefore you get a parking pass,’ and I go to the next room and have to say, ‘Oh, you have this diagnosis, but nobody knows about this diagnosis, so I’m not going to give you anything. Because I literally have nothing to give you.’”

Hobbs says that while frontline work in that kind of setting can be emotionally taxing, it’s the deeper systemic issues that can be most frustrating, especially for social workers who, as she puts it, are always trying to advocate for equal treatment for everyone. “As much as we want to give everybody the same amount of resources, it’s just not there. And that’s a far more complicated thing to address than just dealing with something stressful,” she says.

While frontline workers may shoulder much of the day-today stress, those in management roles often struggle to motivate workers, meet demands, and grapple with limited resources. Todd Leader, a registered social worker and psychologist in Halifax, has spent much of his career managing teams of social workers in mental health and addictions services. One of his top priorities was preventing burnout among his staff—something he says is linked to a pervasive culture of working overtime and burdening frontline staff with menial, time consuming tasks like paperwork. When Leader was managing a team of mental health social workers, he used simple fixes like giving staff more choice in their hours. When management opened their clinic to evening appointments, he allowed staff to volunteer to work evening hours—if they did, he gave them a half day off, any other day of the week. He also ensured that his staff only worked their allotted hours; no more, no less.

“Staff end up feeling guilty if they don’t [work overtime] because there are so many people who need their services—and it’s not that that’s not true,” Leader says. “But if they’re all constantly working extra hours, or working at home, or on weekends, then management cannot make a really good argument to [the] government that we need more staff.”

Changes can only happen, Leader says, if the system shifts to prioritizing front-line, face-to-face work as the bulk of a social worker’s tasks. “And that’s strictly up to management at all levels, going right up to government levels,” he says. But that all depends on who’s calling the shots. The type of government in power—especially in the province, which regulates health care—can play a big role depending on how much they prioritize supporting social services. The lower that is on their list, the less funding is likely to be doled out, resulting in less workers and services available—but not less demand.

***

in a cramped office on the second floor of the Shepherds of Good Hope, a shelter and social services organization in Ottawa, Mika Barrington-Bush sits at a desk piled high with file folders. Her walkie-talkie blares constantly with communication from other social workers—a safety measure that keeps the team aware of what’s going on. Every few minutes, she waves and smiles at people—mostly her clients—who pass by the small window.

Barrington-Bush works with individuals who are chronic alcoholics, and helps them become stable enough to move on to The Oaks, a hard-reduction-based supportive housing program. She manages about 25 cases at Shepherd’s, and 60 at The Oaks; she says that caseload is relatively manageable compared to many other social workers she knows, not counting her caseload at The Oaks. Still, she says, “I think there’s an expectation that we’re superhuman.”

She describes a scenario similar to other social workers: There’s a lack of resources, limited employee supports, low wages—she brings in about $2,700 a month after taxes, which she says is enough for a single person, but wouldn’t be if she ever wanted to have children.

Of all the things that contribute to mental health issues for social workers, Barrington-Bush says the most troubling is stigma. Having increased mental health awareness hasn’t necessarily encouraged social workers to reach out, or changed how upper management supports them. “I still think people are trying to hide as much as possible any issues that are going on, because they don’t feel they’ll be looked at the same way.”

Przednowek echoes her sentiments. She knows a lot of social workers who live with depression or anxiety, “but they don’t ever say it out loud, because they’re looked upon differently,” both by co-workers and superiors. She says this fear is often intensified when someone is asking for accommodations, like counselling or time off work.

It seems ironic that after dealing with such intense challenges—constant worry, mountains of work, cases of severe trauma—a social worker would find it difficult to ask for help. But Ottawa’s Rocheleau says that’s largely due to their caregiving instincts. “Social workers are used to being in this role of, ‘I’m the rock, you [the client] are the one who’s vulnerable.’” She says this kind of thinking is known as the “Superman complex,” and occurs when a social worker thinks of themselves as the fixer, and as a result feels like a failure when they can’t “fix” a client.

When a social worker’s mental health becomes strained, Rocheleau says their first thought is often, “What’s wrong with me?” rather than, “I need help.” This cycle of shame and guilt is what can hold them back from reaching out.

Rocheleau believes that even in an ideal world, where caseloads are manageable and staff support is abundant, many social workers would still feel this shame. It’s about acknowledging, “What can we do, even in that ‘un-ideal’ world?” She says this means having better self- awareness about limitations and boundaries, and accepting that you simply can’t do it all. After all, there is something deeper that drives many social workers: an innate desire to help and care for others.

As Barrington-Bush says, it bothers her when people outside of social work always say “Oh, that must be such hard work,” or, “Oh, you must feel scared doing that,” because it misses the depth of importance behind what she does. “Our clients are really special people. They’re the people that never fit into the boxes, and so there’s a level of realness to them that we don’t often get in other people,” she says, “Being in their midst makes life so much more meaningful.”

***

After years of research and learning how to cope with stress and trauma, Rocheleau found her way to healing. Along with her most recent job as a counsellor at an addiction treatment centre for men, she provides therapy to those who are going through something similar to what she did years ago. She also runs compassion fatigue and wellness workshops for professional and personal care workers, where she teaches coping strategies such as “self-compassion”: acknowledging when a difficult moment happens and how it affects you, instead of pushing emotions away. Rocheleau says these are things that, unlike hot baths or a Netflix marathon, can be realistically incorporated into everyday workplaces.

“If we go out there as a healthy community of care providers, that’s how change happens systemically,” she says. Her goal is to help people realize it’s okay to be vulnerable and reach out, because so many social workers feel isolated in their pain.

At her workshops, she always poses the same question: “How many of you have ever thought, ‘I’m always there for everyone, and no one is there for me?’”

Each time, she looks around the room. And each time, without fail, she sees that someone has broken down in tears.

UPDATE (04/13/2018): A previous version of this story incorrectly stated that an OASW study was from 2009, when the paper was in fact an analysis of a 2006 study’s results, not a follow-up with new or updated information. This regrets the error.