Join us to celebrate the launch of our new Long COVID oral history website! You’ll hear from project organizers and participants about their experience in creating a community-centered, people’s history of Long COVID. We’ll share the story behind the project, highlights from the interviews, and more.
Listening for the Long Haul (LFLH) is an oral history project grounded in disability justice that features 20+ interviews with people living with Long COVID and associated conditions (LCAC). LFLH is a collaboration between Long COVID Justice and History Moves, a public history project based at the University of Illinois Chicago (UIC).
LFLH Launch
Weds May 6, 4:30-6pm ET
Zoom
Featured speakers
Speakers include project organizers as well as “Narrative Architects,” who are people living with LCAC who were trained to interview community members about their experiences, plus tell their own stories.
Chimére L. Sweeney, Narrative Architect
Chimére is a retired educator and Long COVID activist, writer, and lecturer. Her mission is to inspire and empower Black patients to tell their unique stories on the physical, mental, and financial effects of Long Covid.
She is the Director of the Black Long Covid Experience and the curator, writer, and host of The Blackest Side of Long Covid substack and podcast.
Jacquie Luciano, Narrative Architect
Jacquie is a Filipina-American who worked as a Regulatory Nurse Consultant until she was further disabled by Long COVID and associated conditions in 2022.
She is a Long COVID Advisor for the National Organization for Nurses with Disabilities, and a contributing author to Systemic Ableism: Critical Perspectives on Disability, Equity, and Access. Jacquie co-founded Breathing for Justice, a project exploring intersections of Long COVID and Disability Justice.
Tracey Thompson, Narrative Architect
Tracey is a Long Covid Patient Advocate and founder of BIRCH (Black Indigenous Racialized Covid Health). She works to utilize her lived experience of Long Covid to break down the barriers faced by marginalized groups when attempting to access information, healthcare and supports.
Tracey strives to inform and educate about the history of post-viral illness, medical bias and disability justice in working class movements.
Una Osato, Narrative Architect
Una (she/they/flower) is a performer, writer, and community organizer born and raised in NYC, where she teaches Sex Ed to high school students. Una’s shows draw on clowning, burlesque, popular education, and storytelling, and have toured nationally and internationally.
When not on stage, Una can be found cheering on the New York Liberty, movements for collective liberation, and/or being a Spoonie in bed.
Dr. Jennie Brier, LFLH project lead
Jennifer Brier is professor of Gender and Women’s Studies and History at the University of Illinois Chicago. Brier is the author of Infectious Ideas: U.S. Political Response to the AIDS Crisis (UNC, 2009). She has curated numerous historical exhibitions, including Out in Chicago for the Chicago History Museum, “Surviving and Thriving: AIDS, Politics and Culture,” a traveling exhibition for the National Library of Medicine, and “I’m Still Surviving,” a transmedia living women’s history of HIV/AIDS.
Kamara Herron, LFLH manager
Kaimara Herron is a fourth year PhD student in History at the University of Illinois at Chicago (UIC) and Project Manager for Listening for the Long Haul.
Gabriel San Emeterio, Long COVID Justice senior fellow
Gabriel is a queer activist raised in Mexico City and living in New York City for the past 23 years. Following their commitment to social justice, Gabriel obtained his graduate degree with honors from the Silberman School of Social Work with Community Organizing as a method of practice and a certificate in Social Policy. They are also honored to be a member of the HIV Caucus (aka U.S. People Living with HIV Caucus).
Access notes
- Panel followed by Q&A
- Presentations will be in spoken English with ASL interpretation
- Audio description of visual materials will be included
- Participation in chat or Q&A is optional
- Check the event time in your time zone
- Recording & resources will be sent to all who register.
- Access requests or other questions? Write [email protected]
LFLH: Project goals & vision
Rather than try to create a singular, mainstreamed account of Long COVID, we collected a variety of stories from a small group of people most impacted by LCAC and its social and economic ripple effects. This includes many voices from marginalized communities and intersectional identities, including a variety of identities across race, gender, disability, class, immigrant status, location, and more.
This project is an offering to our fellow longhaulers. We’re sharing our struggles and joys, moments of connection and isolation, tales of survival and solidarity. We’re building a living history of Long COVID, and pushing back against COVID denialism and ableism. Our stories are powerful, and our hope is that we can use them to shift the narrative of Long COVID – including educating healthcare providers and creating concrete changes in the care and support that we need and deserve.
This project is possible due to generous funding from the Andrew A. Mellon Foundation’s Humanities without Walls Consortium and UIC Institute for Policy and Civic Engagement.