Communal knowledge: an experiential understanding of chronic illness

In her work, Kalindi Vora looks for the hidden narratives of modern life — drawing connections between forces like artificial intelligence and globalization and individual experiences of race and gender. A cultural theorist and ethnographer, she studies the impact of histories of science and technology on contemporary arenas of labor, health, and design.

Her first book, “Life Support: Biocapital and the New History of Outsourced Labor” (2015), a study of Indian call centers and surrogacy clinics, examined how care, love, trust, bodies, and organs are commodified for the benefit of consumers in the global North. Her work since then has examined the racial and gendered politics of robotics and AI; the relationship between digital technologies and insecure working conditions; and gestational surrogacy in India.

Now Vora is turning her attention to the medical system and chronic illness, seeking to break down barriers between the academy and the broader public. “My work is committed to being accountable to the grass roots and community members,” said Vora, a professor in the departments of Ethnicity, Race, and Migration, Women’s Gender and Sexuality Studies, and American Studies, in Yale’s Faculty of Arts and Sciences. “It is important to recognize the knowledge that comes from communities who are most affected by our research.”

Her current research projects related to understanding chronic illness include a forthcoming book and a collaborative project, Enduring Conditions, which aims to develop a nation-wide network of scholars, culture workers, community members and organizers. The latter, funded by a $1.5 million grant from the Mellon Foundation, in collaboration with the University of California, Davis (where Vora previously served as director of the Feminist Research Institute), is a multi-year effort to consider chronic illness through the lens of disability studies.

Vora recently spoke with Yale News about value-driven research, bringing community-based forms of knowledge into the academy, and how to build a research project with “radical accessibility.” This interview has been edited and condensed.

What is the importance of experiential knowledge — for instance, a patient’s understanding of how illness affects their body — in your work?

Kalindi Vora: You can see this in my current book project — tentatively titled “Autoimmune: Chronic Conditions and Care in a Time of Uncertain Medicine” — which is about the importance of how patients narrate their illness. I’m focusing on patients who also experience structural injustice in their everyday lives and thinking about how they can or should be able to collaborate with their care providers. I’m doing interviews with patients and practitioners, both in mainstream medicine and alternative medicine.

The hypothesis is that patients often know a lot more about their disease than their health care givers can typically access. Not necessarily the science, but the experience. Experiential knowledge is an important piece of the whole.

What inspired you to approach the issue of chronic illness through the lens of feminist studies and ethnic studies?

Vora: I started research for my current book before the pandemic began. I later came across an article in The Washington Post by Francis Sellers, who was the first person to call COVID a “mass-disabling event.” That article introduced the urgent need to bring together everything we’ve learned from the history of disability justice activism and advocacy to support the growing number of chronically ill people, including those with long COVID. Because what they have in common is a history of being dismissed and denied access by institutions, medical and otherwise. I later learned that even before this, a disability justice advocate named Imani Barbarin posted a TikTok using this term to describe COVID.

Long COVID was a patient-derived term, created by people whose symptoms and concerns were being dismissed by their doctors. Experiential knowledge, even expertise, like this can be ignored in favor of conventional knowledge. Within the fields of ethnic studies and feminist studies, experiential knowledge is valued, as it is in disability studies. Bringing together these forms of knowing with what medicine is discovering in response to patient and physician advocacy is critical.

What is the Enduring Conditions project and how did it come about?

Vora: It grew out of a collaboration with my colleague Ryan Cartwright at UC Davis. We started thinking about it in 2019, right before the pandemic began, but when the Mellon opportunity came up, Ryan asked if I wanted to collaborate with him to bring together disability studies and studies of chronic illness.

We proposed a project that would build on the incredible legacy of work that’s been done in disability justice and advocacy, but also in disability studies, which is found largely in the humanities, and put these into conversation with scholarship on chronic illness, most of which is in the social sciences. It’s not so much a question of what a social science approach might be missing as it is saying, “Here’s another body of scholarship and, if we bring them together, they’ll allow us to be able to address the current moment in a way that we otherwise couldn’t.”

What are your goals for the project?

Vora: Our goal is to build a community for the participants, not just at Yale or UC Davis but across the country. Along with seminars for graduate students that Ryan and I will co-teach, we’ll hold workshops, seminars, and two summer symposia to bring together academics and collaborators from across communities, all to consider the intersection of research and advocacy concerning disability and chronic illness.

We’re also thinking about the future of academic leadership in these fields. Disabled people are very much underrepresented in the U.S. professoriate, so we’re trying to create mentorship structures for people with disabilities and chronic illnesses.

Most of the grant we received from the Mellon Foundation will go towards what we’re thinking of as “radical accessibility.” That basically means giving people whatever support they need to have full intellectual participation in the project.

For example, the two summer symposia [one at Yale and one at UC Davis] will bring together a network of community members, advocates, organizers, activists, students, and faculty from across the country. We’ve budgeted for accessible transit, to have cots and couches available, quiet rooms, chemical and fragrance-free products, as well as CART [computer-aided real time transcription] and ASL [American sign language] interpretation. This also means doing advanced research into accessible spaces and services needed on each campus or advocating for the creation of accessible spaces.

We’re also simplifying the application process and reducing administrative hassle, which I think can often be a hindrance for people whose energies are otherwise engaged, say, in taking care of their own access needs. And we are committed to financially supporting people who need physical aids to travel or who have dependents with whom they need to travel.

What goes into the kind of community-building work you’re pursuing in this project?

Vora: In our budget we have support to talk to people outside of the academy, people with different kinds of knowledge and experience, and to interview them as consultants. We have meetings planned for the next three years to talk to people who lead organizations and community members who have been advocates for disability rights.

We’re forming a “vision council,” which is a group of diverse experts to whom we will bring our ideas as professors and researchers. We will solicit their feedback, based on their experience working with different communities, as to whether they think our proposals will serve the populations they work with. The vision council and the community consultations are really about understanding, from the ground up, what that kind of radical accessibility would look like.

Who else do you hope to collaborate with?

Vora: I’ve only been at Yale for two years, but one of the things I’m excited about is connecting with some of the work that has already been done here. There are people who are not primarily in disability studies but who teach some of that content in their courses, such as Roderick Ferguson [the William Robertson Coe Professor of Women's, Gender, and Sexuality Studies, American studies, and African American studies], Regina Kunzel [Larned Professor of History and Women’s, Gender, and Sexuality Studies], and Joseph Fischel [a theorist of social and sexual justice in the Department of Women’s, Gender, and Sexuality Studies].

Others who’ve already built community and access at Yale that I look forward to continuing to work with include the group Disability Empowerment for Yale, the Medical Students with Disability and Chronic Illness at Yale, Yale’s chapter of Delta Alpha Pi, the Disability Studies Working Group, the Disability Peer Mentorship Program, and the Disability Peer Liaisons Program.

I’m also hoping the grant for this project will let us reach outside of campus in New Haven and talk to people who have done advocacy and organizing and learn from them.

How can interested members of the Yale and New Haven communities get in touch with the Enduring Conditions project?

Vora: We’re in the first year, which is a planning year, and I am recruiting people who are interested in envisioning what the next two years will look like. People who are interested can reach out to me at enduringconditions@gmail.com for information about upcoming organizational meetings.