Lingering with the Environmentally Ill
Those who receive an official diagnosis of multiple chemical sensitivity (MCS) have been overwhelmingly white; one has to be relatively privileged to get that diagnosis. My team members and I sought voices of black, indigenous, people of color (BIPOC) for this environmental archive, hypothesizing that BIPOC individuals probably did not use “multiple chemical sensitivity” to characterize chronic conditions brought on by toxicants outlined, for instance, by Claudia Miller in Chemical Exposures: Low Levels, High Stakes. Therefore, if we recruited specifically BIPOC individuals by asking about their workplace exposures to chemicals, would they tell us their stories of chemical sensitization? Yes, indeed, they did. Our efforts resulted in higher proportions of BIPOC interviewees in the 67 interviews for which we have complete demographic information: 68.7% of the interviewees were white (46) while 31.3% were BIPOC. That nearly a third of the oral histories are from communities of color renders this archive distinct from prior studies that have featured voices from overwhelmingly (89+% white) individuals.
The pandemic linked to SARS-CoV-2 crosscut our interview period with many interviewees addressing how either the pandemic upended their lives or, ironically, made them feel less stigmatized for wielding respirators and other medical equipment in public spaces. To ensure continued care for the stories (illness narratives, activism stories) we were collecting, we facilitated access for future scholars and researchers to the voices of those with chronic illness. In partnership with the UCLA Young Research Library, this collection of oral histories, the Oral Histories of Environmental Illness archive (OHEI), is searchable on the world wide web. The OHEI is a public archive not a private collection.
The social (rather than medical) model of disability purports that “disability lies not in the person in the wheelchair but where the wheelchair meets the staircase.” Disability identification seeks accommodations for disabled persons to live fully within public and market spaces rather than sequestered in institutions that segregate or surgically alter them for the good of society and themselves. Key figures in U.S. disability activism include the late Judy Heumann who in alliance with Black Panther members such as Chuck Jason and black disabled participants, Brad Lomax and Dennis Billups, won access and accommodations in housing and education through a 26 week protest in 1977 known as the 504 sit-ins (Schalk). This activism achieved landmark civil rights legislation barring institutions who receive federal funding from discriminating against those with disabilities.
Like disability studies, decolonial studies seeks changes in social structure and infrastructure to support the lives of black and brown peoples of the global South who either are disabled now or likely to become disabled later. Decolonial studies looks upstream—across longer durations of time and space—to identify settler-colonialism, white supremacy, and capitalism’s valuing of profits above all else as salient causes for disabling infrastructures: from lack of elevators in subway stations; to shoddy building maintenance, burst water pipes and mold growths; to Chevron’s gas flares at Ecuadorian and Nigerian oil extraction sites; to neoliberal economic systems and global debt finance eroding healthcare systems and undermining locally grown food, clean water, and shelter the world over.
Black, indigenous, and people of color (BIPOC) may also not want to acknowledge having a disability. As Leah Lakshmi Piepzna-Samarhinsa remarks, “For many sick and disabled, Black, Indigenous, and brown people under transatlantic enslavement, colonial invasion, and forced labor, there was no such thing as state-funded care. Instead, if we were too sick or disabled to work, we were often killed, sold, or left to die, because we were not making factory or plantation owners money” (38).
As a settler person-of-color, specifically a U.S.-based Asian American woman, I’m well aware that my value to a capitalist society lies in how much work I manage each day. Chinese New Zealander and memoirist Rose Lu speaks to such value, conveying her surprise when she learns that her office cleaner is also a software engineer. This cleaner saves his days for “his office job” doing a few cleaning contracts at night and on weekends: “[You know,] us Indians and Asians feel like we gotta play catch-up all the time” (25). Perpetually having to play catch-up translates into a deep dread of getting sick and operating at a slower pace. In 2007 (when I was diagnosed with Graves autoimmunity) and in 2014 (when I became catastrophically sick from mold), I accepted that, in extension of the social model,
disability lies not in a chemically altered (endocrine- or mycotoxin disrupted) body-mind; rather, disability lies where bodies-and-land meet expectations of purity and (hyper)productivity.
But, at the same time, I did not feel comfortable ‘outing’ myself as disabled when I was in most need of care. How much of that hesitation bespeaks the cherishing of youth and (passing for) neurotypical(ity) and how much of it is a function of internalized racism and sexism? And how are they related?
The phrase bodies-and-land is indebted both to feminist theorists of embedded embodiment (Murphy, Haraway), who emphasize that we are cultured by the ecologies and societies that we’ve inhabited, and to indigenous scholars who emphasize land itself as “alive, intelligent, [and] willful” with humans’ knowledge of the world and ethics coextensive with their (good and bad) land relations (Latulippe & Klenk). As made clear by discard studies and activist groups like Women's Voices for the Earth and the Environmental Working Group, bodies-and-land in the US have already become intoxicated past the point of resiliency (Liboiron).
As I continue to linger with, listen to, and hum alongside the voices of the environmentally ill, I want to amplify public appreciation for the many mundanely crip ways they/we have coped and persisted in our “permanently polluted world” (Liboiron, et al). Let us dissuade ourselves and others from disabling ourselves-- bodies-and-land--further.
[1] Our fantastic team included graduate students Kelsey Kim, Nic Yiu, Molly Bloom, Blair Black, Abraham Encinas, Tony Wei Ling, Rebecca Chay, Sal Herrera, Samantha Solis, and Ash Farnan and staff researchers Alexandra Apollini, Katja Antoine, and Rachel Vaughn. Our team is grateful to community partnerships with the California Health Nail Salon Collaborative and the California Domestic Workers Association, giving special thanks to Lisa Fu, Megan Whelan, and Alexandra Early.
