When resilience is part of the problem

By Louise Kinross

I just had a lightbulb moment.

I was reading Resilience is an Adverse Event, a paper published yesterday in Community Health Equity Research & Policy. The American authors are social worker Brianna Suslovic and statistician-epidemiologist Elle Lett, who is training to be a doctor. They write "from a Black queer and trans feminist perspective."

They note, in recent years, a surge in popularity of resilience theory in public health, medicine and allied health professions.

They define resilience as "the ability to respond to stressful or traumatic situations in healthy or positive ways."

The problem, they write, is that focusing on the individual to adapt to structural trauma is misguided.

The "'resilience as treatment' paradigm places the locus of intervention for structural harms within the marginalized individual, a fundamental 'mismatch' that facilitates maintenance of the status quo," they write.

In thinking about resilience as an individual trait, we fail to acknowledge and address the harm that precedes it, they say. "Through a sociological lens, resilience is often conceptualized as a neoliberal technique of governance, placing the onus for posttraumatic adaptation on the individual rather than the systems through which trauma is transmitted."

For example, they reference numerous studies that seek to identify factors that spark resilience in people who experience racism. "These studies call for individuals who experience systemic racism (interpersonal and structural) to adapt to this exposure by becoming resilient."

The uncomfortable truth is that we have "unequal expectation of resilience across populations" and social identities like race and disability "play a role in determining who must become resilient in the first place."

Bingo.

It made me think of the endless studies over the last two decades showing parents of children with disabilities have higher rates of depression and anxiety than parents of nondisabled children. We also have strong evidence that children and adults with disabilities are more likely to experience these mental health problems than their peers. 

In both parents and children, we see a move to promote resilience as a coping factor, which puts the emphasis on the parent or the person with disability to change or adapt to how they are devalued in health care and the culture at large.

"Structural harms require structural interventions that work outside of the individual...' the researchers write.

Here are some examples in the disability world: Raising a child with a disability costs more. When parents reduce work hours or leave a job to care for a child with a chronic health condition, it costs the family an average of US$18,000 a year in lost income, according to a 2021 American study published in Pediatrics.

Lack of home-care nursing and the need to care for a child around the clock puts parents' health and a child's safety at risk. A 2019 viewpoint piece in JAMA Network found parents of children with high medical needs spend, on average, up to 52 hours a week providing care at home, with more complex conditions requiring more hours. They note this exceeds what is considered safe in industries where fatigue can impair performance and increase the likelihood of errors.

Last year a study found the poverty measure Canada uses to set income supports doesn't factor in the extra costs of having a disability. That's because it assumes everyone is non-disabled. According to American research, disabled people need an income two to three times higher than non-disabled people to avoid food insecurity, because they're often paying for caregivers, assistive devices and special diets.

Here in Ontario, disability support for adults who can't work is set at poverty rates. In this 2021 study in Disability and Society about how Toronto adults with disabilities get food, most participants said their limited, fixed incomes put eating heathy food out of financial reach. In addition, many can't afford accessible housing and face physical barriers at home and when grocery shopping.

One participant couldn't fit her wheelchair in her tiny apartment, so moved around the unit by "[hanging] onto the walls," making certain types of food preparation in the kitchen unsafe. Broken elevators or assistive devices and entrances and paths blocked by snow or construction could make it impossible for participants to leave their unit to get food. One participant recalled an ice storm when she didn't have food and couldn't afford to have it delivered. Her option? "I just wait until the next day and drink a glass of water."

Recently, we've seen a number of Canadian media stories about students with physical disabilities who can't get assistants to support them at school. As a result, a parent waits in a car in front of the child's school all day in case the child needs help to go to the bathroom. Students with disabilities who are bussed to school already experience shortened school days. They get less hours of education than their peers because they have to fit into the schedule of a bus company.

Harvard University research finds that while hidden bias based on a person's race or sexual orientation is dissolving rapidly in the United States, implicit disability discrimination persists. And we see it in medicine. A 2021 study in Health Affairs found 82.4 per cent of 714 doctors across the United States don't think it's possible to live well with a significant disability, and only 41 per cent feel confident in their ability to provide the same care to a patient with a disability that they give other patients.

Last year we reported on a study that looked at how traumatic hospital experiences contributed to depression and anxiety in parents of children with complex medical problems. "The thing that surprised me the most was the kind of inconspicuous trauma that I've been a perpetrator of, whether it was in the language that I used, or the setting," lead investigator Dr. Tammie Dewan, a hospitalist at Alberta Children's Hospital, told us. For example, parents are expected to hold their child down during painful and anxiety-producing procedures. "That's a really good example of a system contributor to trauma," she said.

Instead of viewing resilience as a treatment for trauma, it's more accurate to think of it as the lingering scar tissue," say the authors of the new paper. In this way, we can consider resilience an adverse event in itself. There are two sides to resilience, they write, one "a coping mechanism and one a source of dysfunction and sign of harm."

I reached out to author Brianna Suslovic at the University of Chicago about how these ideas might apply to the disability community.

"The experiences of disability and caregiving are both areas in which prioritizing resilience is a misguided impulse," she wrote in an e-mail. It amounts, she wrote, to "trying to 'fix' people who are most vulnerable to ongoing oppression and bias."

The authors point to a holistic trauma framework which emphasizes collective healing, and a liberation health framework, as possible alternatives or additions to resilience theory. The latter stresses that clinicians work with clients and patients on multiple levels: the individual, the cultural, and the institutional. "This kind of formulation encourages practitioners to pursue social justice alongside their patients..."

When using resilience as a central paradigm in research, the focus must be on how to reduce and prevent harm, rather than the aftereffects of harm. Otherwise, we risk "[normalizing] structurally induced suffering," they say.

"A social determinants-informed approach to research and practice is one that considers the kind of social change needed to prevent health disparities in the first place, rather than placing the impetus for adaptation on individual patients."

Like this story? Sign up for our monthly BLOOM e-letter. You'll get family stories and expert advice on raising children with disabilities; interviews with activists, clinicians and researchers; and disability news.