Symposium on environmental illnesses highlights new multicampus research initiative

Sean Brenner | November 14, 2023

Around the early 1910s, coal miners began sending birds into mines as a way to detect the presence of carbon monoxide or other toxic gases. The phrase “canary in a coal mine” would soon become widely used shorthand to describe something that could be used as an early indicator of danger ahead.

A UCLA symposium scheduled for Nov. 17 and 18 will apply that idiom to discussions of environmental illnesses and the human stories that are often ignored or misunderstood in modern medicine’s treatment and care for people with chronic illnesses. The event, “Canary Knowledge: Chronic Fatigue, Chemical Sensitivities and the Limits of Medicine,” will be held at Mira Hershey Hall and livestreamed.

The symposium was envisioned and planned by Rachel Lee, a UCLA professor of English and gender studies, and Helen Deutsch, a UCLA professor of English and disability studies. Speakers will include scholars from UCLA and other universities, representing a wide range of academic disciplines, as well as activists and artists.

Many of the topics will be especially timely in the wake of the COVID-19 pandemic, considering the sometimes-confounding health challenges facing people with long COVID.

“The discussion will focus on the patient experience as a way of understanding not just long COVID, but also other invisible illnesses that the medical establishment doesn’t have sufficient tools to comprehend,” said Deutsch, adding that the conversation will be relevant to anyone who knows people with long COVID or other illnesses that have exceeded their doctors’ knowledge.

The event also will bring to life some of the topics being examined in a new three-year research initiative that involves faculty and students from UCLA, UC Irvine, UC Riverside, UC Santa Cruz and UC San Francisco. Through that project, called “Abolition Medicine and Disability Justice,” faculty and students are working to identify structures of inequity in the nation’s health care and health policy systems, and to reimagine education and health care delivery within and outside of clinic settings — with each campus pursuing a different focus.

UCLA’s component of the research project will investigate illnesses that have stumped clinicians past and present.

“So many people with conditions that are hard to diagnose have heard from their doctors ‘It’s all in your head,’ when their lab tests appear to be normal,” said Lee, who also is affiliated with the UCLA Institute for Society and Genetics. “But now there is this activist group of patient-led researchers who are telling academic medicine researchers, ‘You need to include us in your research,’ and that had never happened before.”

UCLA scholars also will examine how personal histories from patients can provide insights into the history of disability in society and the arts. UCLA’s Oral Histories of Environmental Illness, housed at the Charles E. Young Research Library’s Center for Oral History Research, is just one such resource.

The Canary Knowledge symposium is presented by the UCLA Center for the Study of Women and the UCLA Barbra Streisand Center, and is cosponsored by UCLA Disability Studies, the UCLA divisions of humanities and social sciences, and the Office of the Vice Chancellor for Research and Creative Activities. Visit the symposium’s registration page for more information.