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 bend 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.

Which made me consider exactly what are we doing to address implicit disability bias and structural harm against children with disabilities and their parents?

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 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. The latter stresses that clinicians work with clients and patients on multiple levels: the individual, the cultural, and the institutional.

“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,” they write.

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