Coauthored by Jonathan M. Adler, Ph.D., and Kathleen Bogart, Ph.D.
The early years of the COVID-19 pandemic were hard for most people, but they hit people with disabilities especially hard. Research across a variety of disciplines has documented disproportionate negative impacts on employment, overall quality of life, rates of mental health symptoms, and mortality for people with disabilities compared to their able-bodied peers. But many people with disabilities also entered the pandemic with certain experiences that made them better prepared for the upheavals those years brought to everyone. For example, many people with disabilities already had practice with adapting to lockdown-type conditions, including experience with masking and with online communication, strategies often necessary for coping with chronic health conditions and mobility challenges.
A new study we conducted provides evidence that it wasn’t only the life experiences of people with disabilities that prepared them for the pandemic but also their distinctive way of making sense of their lives.
We followed a sample of 108 American adults with disabilities over the first three years of the pandemic, from the fall of 2020 through the fall of 2022. In addition to collecting data about their psychological well-being, we also collected their stories. Grounded in research on what psychologists call narrative identity—the stories we tell about our lives—participants shared more than 950 stories of high points, low points, and moments when their disability was especially salient over the course of three years. Based on previous qualitative research (Adler et al., 2022), we were especially interested in the themes in our participants’ self-stories. Indeed, that prior work suggested that people with disabilities often narrate their sense of self as highly interdependent, focused on the ways in which we all rely on others for mutual, reciprocal, and dynamic support. This emphasis on interdependence is quite different from dominant American narratives of self, which tend to prioritize independence.
We found that people with disabilities did indeed narrate their identity by elevating the theme of interdependence. For example, in the fall of 2021, one participant shared this story about navigating a world that wasn’t designed for her disabled body:
It’s been a bad fall for my crip BFF and me: she’s had terrible spinal issues and I fell and am on crutches indefinitely. She’s also on crutches to help with her mobility. We’ve messaged each other every day of the pandemic. We made our Covid vax appts together…Anyway, I’ve driven her to a few of her very many doctor’s appointments this year, and she asked me specifically to take her to the neurosurgeon‘s office. This was on the day after I fell (arranged before then), and it was a fun road trip to go together, two crutch users confusing the medical staff with our entrance. She had me come back with her because she was afraid of being overwhelmed in the possibility of spinal surgery. She doesn’t have to get surgery at this point, as it turns out, so it was a happy appointment but was going to involve a lot of follow up and more tests. It’s not that it was a particularly good time. I had a cooler bag full of ice packs to put on my leg while I drove since it was still all swollen. But we were together, disabled in our own ways, chattering away in the car, talking about work and medical appointments, ranking our fave Star Treks, and talking family drama. Just getting along, together.
In this story, the participant poignantly illustrates her interdependence, as she and her friend rely on each other for so many pieces of daily life. We chose to title the paper reporting this research using this participant’s words, because “Just getting along, together,” is so emblematic of the theme of interdependence.
But in addition to identifying the theme of interdependence, we also tracked it over the changing conditions of the pandemic. What we found surprised us. In the fall of 2020, when most people were living under quite extreme lockdown conditions, narrating one’s life with a high degree of interdependence was actually associated with more negative mental health. In contrast, by the fall of 2022, when the material conditions of the world had largely opened up, narrating one’s life with a high degree of interdependence was associated with more positive mental health. In other words, it seems that the way we narrate our lives is in constant dialogue with the material conditions of our lives. While people with disabilities may benefit from an interdependent way of storying their experiences under typical conditions, when there is a major aberration in those conditions, like the pandemic lockdowns, narrating one’s life interdependently may be challenging for mental health.
The study, which was just published in Journal of Personality and Social Psychology, demonstrates that people with disabilities have adopted a way of storying their lives that emphasizes their interdependence. This approach supports the psychological well-being of people with disabilities and stands in contrast to dominant American stories that elevate independence. And the study also demonstrates that all of our life stories are inextricably intertwined with the conditions of our lives.
Jonathan M. Adler, Ph.D., is professor of psychology at Olin College of Engineering and editor of Personality and Social Psychology Review. He is currently writing a book about narrative identity for Penguin Random House’s Avery imprint.
