Listening for the Long Haul: A Living History of Long COVID

Responding to individual and community needs in the face of pandemics

"Listening for the Long Haul: A Living History of Long COVID," the Humanities Without Walls Grand Research Challenge-funded project, is producing a multifaceted community-centered history of Long COVID. They ask how public history can be useful in producing policies that are more responsive to individual and community needs in the face of pandemics and mass-disabling events, and in the process make us all healthier and more resilient. 

"Listening for the Long Haul” is a collaboration with Long Covid Justice (LCJ), a community-based organization, and University of Illinois at Chicago's (UIC) History Moves, a public history project led by Jennifer Brier. Brier recently answered some questions, in consultation with project team members, that help us get to the heart of this HWW-funded project. 

Can you describe the aims of the "Listening for the Long Haul: A Living History of Long COVID" project, and how this collaboration emerged?

Listening for the Long Haul began in a conversation between me (Jennie Brier), gender studies scholar and historian at UIC, and longtime health justice activist JD Davids, Director of Long COVID Justice, a project of Strategies for High Impact. Davids and I have worked together in a health justice collective called What Would An HIV Doula Do? (WWHIVDD?) for several years and when the HWW call for applications came out, we began to discuss what a collaboration could look like. At its core, this conversation and the entire project narrative that followed worked with a seemingly simple question: can history (historical thinking, oral history, historical methods) help advance the work of Long COVID Justice, namely to “link patient-led support groups and information sharing, groundbreaking research, grassroots community organizing and mobilization, communications, and policy analysis and advocacy for local, state, federal and international policies on the COVID-19/Long COVID pandemic.”

Listening for the Long Haul seeks to collect and preserve stories from those who have been most impacted by the COVID-19 pandemic and its social and economic ripple effects. To do this, graduate students from UIC and narrative architects (people living with Long COVID and Associated Conditions [LCAC]) who are active with Long COVID Justice) spent several evenings over the summer of 2023 together learning how to collect oral histories. To date, we have collected about 20 oral history interviews from people across the country.

We are currently working on a model to share these historical narratives among our team of 20+ budding historians involved with the project. Once that is complete, we will shift into the process of imagining and designing a fully accessible public platform for sharing these narratives at the intersection of healthcare and public policy. We aim to use these co-created, multifaceted histories as a centerpiece of LCJ’s strategic vision for creating data-informed communication and narrative strategies, sharing timely patient-led information and perspectives, and supporting communicators living with LCAC.

This project amplifies the historical experiences of long haulers, health justice activists, humanities scholars, health practitioners and policymakers in a digital conversation series that insists that Long COVID be included every conversation about COVID-19, and that history be included in every conversation about the pandemic and its aftermath.

In what ways do you think the methodologies of reciprocity and redistribution lent themselves to fostering collaborative partnerships among the various stakeholders?

Reciprocity and redistribution are at the core of the project and we work to hold ourselves accountable to those tenets in each stage of the project. We began with a collaborative strategy for generating the project budget. At the suggestion of LCJ, the project team used the National Health Council’s Fair Market Calculator to determine the hourly rate we would use to compensate narrators. We also made the decision that every person working over the first summer of the project would receive the same amount of money: $5,000.

Building and maintaining relationships has been fundamental to our recruitment strategy as we relied on our graduate fellows, narrative architects, and collaborators from LCJ to disseminate information within their networks and generate participant narrators. This has generated a list of participants from a variety of backgrounds and circumstances who are actively shaping the structure and potential outcomes of the project. This strategy brings narrators into the project, but it also creates administrative hurdles that the university is not always equipped to address. The paperwork and processing of payments is a perennial problem for community-engaged research and no amount of commitment to redistribution at the team level can make the institution move faster. This makes it hard to practice reciprocity even though it is never intentional. We are keen to think with other GRC projects about how we make universities good partners and not just institutions that say we are doing community engagement, come do it with us.

Now that almost all of the narrators have been located, agreed to be part of the project, and compensated for their time, we are able to advance our oral history method, which takes place among three people instead of the traditional two. This action is based on a model that sees oral history work as a process of shared authority, a term historian Michael Frisch introduced decades ago. We see this as a structural issue as well and so the UIC and LCJ teams worked with the people who agreed to share their historical narratives to ensure that they were able to choose the amount of time they were able to commit to the project. Our budget allows us to compensate narrators for three meetings with their interviewers. The third meeting serves as a group review of the transcript after the narrator has had the opportunity to review and edit it individually. We see the process building a mechanism for narrators to be part of shaping the historical interpretation alongside the interviewers.

How has GRC funding impacted the scope of this project?

Receiving the GRC funding has allowed us to actually listen to what people with LCAC have to say, but is not the kind of support required to actually do that for the long haul. When we first approached the possibility of applying for this funding, we talked about how project- or program-based funding can be a challenge for community-based organizations to implement. In some ways, the model simply adds more work to the people working on the program without necessarily adding people or capacity to the organization. But programs are what funders want to fund rather than general operating costs. Academics and academic institutions also need to be aware of the issue of how programming can spread organizational and operational mechanisms too thin.

As we developed the budget, we were honest with each other about who would be responsible for doing what work. For LCJ this meant supporting the salary of an administrator and also the cost of their fiscal sponsorship by Allied Media Project. LCJ administers the compensation for the narrative architects and all the narrators. This is not a small task for an organization with a small staff. We are excited that over the last few months our main partner from LCJ has been, and will continue to be, Emi Kane. Emi comes to the work from years of experience in feminist of color anti-violence organizing and brings her experience as an organizer, educator and researcher to sessions.

At UIC, we took on the administrative side of hiring and paying the graduate students. All of this is to say that none of this project would have been possible without the GRC funding, but also that the funding is never quite enough to integrate the work of Listening for the Long Haul into the work of either organization.

There is not, for example, a way to have a corps of historians collecting oral histories in partnership with LCJ for the next five years. It is a project with a timeline. We will complete the work and then think about how to extend the work in other ways.

Can you speak to some of the theoretical and practical considerations and challenges that the collaborative team has encountered as the project was put into motion? How has the direction of the project been altered since the beginning?

Big teams with members from various locations are always hard to organize, and this one is no different. We knew that project members would come from both non-academic and academic backgrounds, and we knew that the narrative architects would be living with chronic illness, but we did not know that a significant number of UIC fellows would be living with chronic illness as well. We have consistently approached this not as a deficit but rather as a space for us to have grace and patience with one another.

We have tried to enact principles of good public education and engagement where we hold ourselves accountable to building a community of practice at the start of each gathering. For example, we held introductory meetings on two different occasions to make space for people’s schedules. We also recorded all of them and took a 20-minute break in between each hour. We also used principles of universal design whenever possible. We took notes for one another in the chat function of the Zoom and also sent out a summary of the session with each recording. We set up community agreements that we kept at the forefront of our conversations.

The project team of 20+ people have also spent a great deal of time talking about how undertaking a project such as this means extracting the lived experiences of our narrators from their living contexts.

We navigate this challenge by collectively imagining how community-based public programming (engaged in justice, wellness, art, and history) can address harm and propel change (institute disability justice) and how to further iterate and transmute the project for myriad public audiences.

We are excited to hear how other GRC projects are addressing this problematic yet ubiquitous university practice.

Describe the next year or phase in the lifecycle of your project. What’s next?

As we are still very much in the collection phase (and trying to do it in non-extractive ways), we are very much still in a space where we are imagining how to take/bring/move the project in its various forms into different sectors. How, for example, should we share the substance with health care providers, with Departments of Public Health, with other disability and health justice organizers and activists? What about college students and other faculty teaching in relevant areas?

We are in the process of contracting with a web designer who can help us transform the oral histories into visual and digital representations. We envision this as a critical outcome of the project and want to support LCJ in getting as much of what they need in terms of their own strategic communication as possible from it. Some UIC and LCJ teams are applying for additional funding to support their work in programming. We are also excited to join our GRC colleagues in July at a writing and publishing workshop to be hosted at the University of Illinois Urbana-Champaign. Our team has existed entirely on Zoom and we are excited to have this opportunity to be together and write together this summer.

Published on April 2, 2024