Contestation and Community Mobilization: Toxic Uncertainty and Contested Illness in East Palestine, Ohio

Virginia Affemann, Red Klug, and Delaney Miller

Introduction

Methods

Contention in a Time of Crisis: Contested Illness and Toxic Uncertainty

"An undertone of unease..."

Contested Illness in East Palestine

The Consequences of Contestation

From Lack of Trust to Needs Must: How Uncertainty Drives Initiative

A Call to Action: The Catalyst for Political Mobilization

Community Engagement En Masse

Looking to the Future

Bibliography

Introduction

The East Palestine Train Derailment Crisis

On February 3rd, 2023, a Norfolk Southern train carrying vinyl chloride and butyl acrylate derailed in the town of East Palestine, Ohio. This derailment and subsequent burn has had rather severe health impacts on residents and visitors, leading to feelings of frustration, anxiety, and uncertainty in the face of future health issues. Some residents do not share this concern, hoping to just move on. Others, such as Misti Allison, have mobilized politically with the aim of helping the town back on its feet. Our project has sought to analyze the ways in which toxic uncertainty and contested illness have manifested in East Palestine in the aftermath of the derailment, as well as how these concepts have impacted public trust and local political mobilization efforts. Using the theoretical frameworks of Auyero and Swistun (2008) and Rajan (2023), we have found that there is considerable palpable evidence for these topics in East Palestine. Future pathways for research could include a more hands on perspective, employing more community engagement in a longer duration of time, as well as long-term medical testing for residents with exposure symptoms.

Methods

Our primary method of data collection was via semi-structured interviews with residents and others present in the aftermath of the derailment. We researched and analyzed secondary sources from anthropological and adjacent disciplines to form the theoretical framework through which we addressed the issues of contested illness, uncertainty, and mobilization in East Palestine. Lastly, we used media accounts out of East Palestine to further complement our interviews and the literature on the topics.

"I don't know how to treat you."

Contention in a Time of Crisis: Contested Illness and Toxic Uncertainty

Toxic uncertainty, for the sake of this project, can be defined as a fear or uncertainty towards one’s medical future; for example, a fear surrounding not knowing whether or not the chemical spill from the Norfolk Southern train derailment will cause cancer or other severe illnesses to oneself or one’s family. The East Palestine context is rife within these sentiments, somewhat enmeshed within the similar concept of contested illness. The keystone text for this discussion of toxic uncertainty is "The Social Production of Toxic Uncertainty" by Auyero and Swistun, 2008. Auyero and Swistun both discuss the social production of toxic uncertainty through both “the ‘relational anchoring’ of risk perception, and … the ‘labor of confusion’ produced through socially consequential institutions,” (2008, 358).

The labor of confusion is defined as the “(mis)interventions of state officials and the (mis)understandings of doctors who serve the local population,” (Auyero and Swistun, 2008, 369). (Mis)intervention is somewhat seen in the East Palestine context, with many individuals being told that the town was safe within days of the derailment and subsequent chemical burn (D’Angelo, November 25, 2023). The (mis)understandings of medical professionals can also be seen in East Palestine, with many people being told that they cannot be helped, simply that it was “something bad,” or that “I don’t know how to treat you,” (Keppler, June 8, 2023; Interview with Misti Allison, April 18, 2024). A quote from Rajan almost perfectly describes this medical (mis)understanding, stating, “There is a considerable amount of guesswork, speculation, and even editorializing by medical professionals, who often must operate without adequate knowledge…” (Rajan, 2023, 34). Even then, East Palestine residents have been told that the levels of chemical exposure are not high enough to “cause short-term or long-term health problems,” being yet another example of the (mis)interventions and (mis)understandings attributed to the labor of confusion in the aftermath of the derailment (Keppler, June 8, 2023).

Also within the labor of confusion is the “neighbors’ (mis)representations of their toxic surroundings,” which have been heavily impacted by the corporations, regulatory agencies, and the media that have a stake in the way in which the derailment is represented (Auyero and Swistun, 2008, 370). One East Palestine resident had remarked that the water in the town was ‘cleaner now than before the derailment,’ citing a University of Kentucky study that we have since been unable to locate. In referencing this ‘University of Kentucky study,’ that resident is preaching a misrepresentation of the toxicity of East Palestine’s water in the aftermath of the derailment, directly in line with the definition described by Auyero and Swistun. The interview with Rebecca Kiger also provided some examples of this phenomenon in the town, as she stated that some people did not get sick, and those people simply just want to move on (Interview with Rebecca Kiger, April 16, 2024). Those individuals who have remained relatively unaffected by the derailment share a common misrepresentation of the town after the derailment, again playing into the labor of confusion described by the aforementioned authors.

"An undertone of unease..."

The sources of toxic uncertainty, as described by Auyero and Swistun (2008), Singer (2011), and Neumann (2016) include misinformation, shifted responsibility, denial, blindness (Auyero and Swistun, 2008, 366), “seeing anthropogenic risk as natural features of the environment,” (Singer, 2011, 152), temporal displacement, bodily disassociation, and contesting outsiders (Neumann, 2016, 439-443). Not all of these ‘sources’ of toxic uncertainty can be seen in the East Palestine context from the research we have conducted, however, we have identified shifted responsibility and denial as key dynamics at work. Moreover, the bodily disassociation discussed by Neumann is actually opposite of what seems to be happening in East Palestine.

Shifted responsibility is defined as, “when respondents argue that poor parenting is responsible for high levels of... contamination;” or simplified as shifting the blame from the disaster to those suffering from the aftermath (Auyero and Swistun, 2008, 366). Blame, in the context of the East Palestine train derailment, has been applied to many different parties, and often deflected from Norfolk Southern’s accountability. Some highlight Trump’s rolling back of railway regulations or the “labour [sic] conditions at the nation’s rail carriers for causing declining staffing and lower safety standards,” (Josh Marcus, February 18, 2023). In an interview with Rebecca Kiger, she stated that she felt as though some East Palestine community members were trying to deflect the blame to others; one is sick because of their personal actions, not because of the derailment (April 16, 2024).

Auyero and Swistun describe denial as, “when residents actually challenge existing data that shows environmental pollution has reached toxic levels,” which fits well with the aforementioned labor of confusion and (mis)representation of toxic surroundings (2008, 366). This denial can also look like the acceptance of data, but denial of its seriousness or ability to cause harm (Singer, 2011, 152). This definition by Singer is more visible in the East Palestine context, with many individuals mentioning that it's ‘just the legacy chemicals’ to blame (Interview with Rebecca Kiger, April 16, 2024; Tyler Wornell, November 3, 2023). A post in the “East Palestine is off the Rails!” Facebook group ironically engages these sentiments, stating, “They must’ve stirred up some legacy chemicals…” in response to a news article regarding dead fish in the aftermath of the derailment.

Bodily disassociation, as discussed by Neumann, delineates a removal of the body from a toxic experience and sense-centered language when discussing toxic events, (2016, 439). In speaking with many individuals from East Palestine, they seem to speak of the issue with first person language: “I felt like I had lead in my lungs,” and “I don’t get a lot of answers,” are just some of the examples found in media sources and interviews to illustrate this point. The discussion of toxic uncertainty in the town of East Palestine goes far beyond these theoretical frameworks. People wonder, “Will I get cancer in 10 years? Will my son be able to have children?” and many other questions regarding their medical future and those of their loved ones (Gyenes, May 16, 2023). Said best by Misti Allison, the derailment caused “an undertone of unease to ripple through the town,” (April 18, 2024).

A mural on the main street of East Palestine showing local pride

"Keep Out: Testing & Cleaning in Progress" signs mark every point of access to the streams running through East Palestine.

"This disaster and the fear of the unknown still keeps us up at night."

(Misti Allison, April 18 2024)

Contested Illness in East Palestine

While some residents of East Palestine are concerned about potential future health issues, many others in the community are already experiencing various health problems since the train derailment. Tamara Freeze, one of these community members, shared her experiences with us during an interview. She described developing severe pain and joint issues after the disaster, to the extent that sometimes she struggles to hold a pen or lift a bag by the end of the day. "I don't have a history of arthritis in my family, but it almost feels like it's rheumatoid arthritis" she explained, "I'm 45 years old, I shouldn't have pain in my thumb and my fingers and my hands and the top of my ankles every single day."

Tamara isn’t alone in experiencing new health issues following the train derailment. In a survey conducted by Dr. Erin Haynes, chair of the University of Kentucky's Department of Epidemiology and Environmental Health, it was found that nearly 3 out of every 4 participants in the survey reported experiencing at least one new health symptom following the train derailment. Over half of the survey participants reported that they were experiencing new upper airway symptoms, and over 80 percent of participants in the survey who live within one mile of the disaster site reported that they experienced new upper respiratory symptoms as well (Haynes, 2024).

Despite the severity of her symptoms, Tamara has not sought medical help. She expressed frustration over suddenly dealing with health issues without explanation but feels reluctant to consult a doctor because she believes she won't get the answers she needs. She mentioned that some residents received diagnoses such as chemical bronchitis shortly after the derailment, but she claimed that the CDC instructed doctors to avoid linking illnesses to the incident after only a few cases were recognized. Many residents in the “Unity Council for EP Train Derailment” Facebook group shared similar experiences, with some saying their doctors refused to connect their health problems to the derailment. One resident even mentioned traveling to North Carolina for medical care to avoid having the disaster dismissed as the cause of her health issues.

The narratives recounted by residents of East Palestine serve as instances of contested illnesses. According to Brown et al., contested illnesses are characterized as "conditions whose causes are either unexplained by current medical knowledge or whose purported environmental explanations are in dispute." The sudden onset of health complications among numerous East Palestine residents following the train derailment appears to exhibit a correlation; however, those experiencing these health challenges continue to encounter obstacles in obtaining accurate diagnoses and receiving adequate medical attention. Tamara and other residents have expressed the belief that they are not receiving adequate medical attention due to the influence of the government and various corporations. Such beliefs are substantiated by the findings of Shriver and Bodenhamer, who discuss numerous instances of contested environmental illness wherein corporations deflect blame and accountability onto affected individuals (2018, 1364). Notably, they cite the case of Gulf War illness, where both the US Government and the Veteran’s Administration disregarded the health concerns of veterans and dismissed the potential link between their health problems and environmental exposures, instead focusing research on PTSD and related emotional disorders (2018, 1363). Shriver and Bodenhamer state that “in cases of contested environmental illness, polluting industries can undermine the effective screening and diagnosis of disease in a variety of ways” and that “there is a long history of corporate deceit that aims to dupe the public in cases of environmental toxins” (2018, 1364).

The Consequences of Contestation

The refusal to recognize or acknowledge the health issues of individuals affected by long-term exposure to multiple dangerous and carcinogenic chemicals not only exacerbates the plight of East Palestine residents but also perpetuates their suffering from these illnesses. Rather than receiving recognition of their suffering, residents encounter assertions from organizations such as the EPA and CDC suggesting that their new health issues are unlikely to stem from the chemical disaster. Consequently, East Palestine residents are prevented from obtaining accurate diagnoses or appropriate treatment for their health conditions. As stated by Shriver and Bodenhamer, “diagnosis is particularly instrumental for those suffering from contested environmental illness because it anchors their illness experiences and helps them make sense of their conditions” (2018, 1363). The deflection by these organizations not only contributes to the trauma resulting from residents' encounters with the train derailment and the following cases of toxic uncertainty, but also prevents them from finding answers to why and how they are sick.

From Lack of Trust to Needs Must: How Uncertainty Drives Initiative

The aforementioned issues of toxic uncertainty and contested illness contribute to a decline in public trust, which can in turn act as a catalyst for community mobilization. Public trust in healthcare and government organizations can suffer in the wake of widespread contested illness and uncertainty, especially in times of disaster such as the derailment in East Palestine. As Conrad and Stults put it, the ways in which healthcare systems handle illness narratives like those out of East Palestine “reveal a pattern of repeated contestation and distrust by the health care system and peers” (2008, 327). During the aforementioned interview with Misti Allison, she echoed these sentiments that many residents sought medical care only to be left without clear diagnoses. She also said some residents were turned away by healthcare professionals after the derailment because they were from East Palestine.

This kind of dismissal and negligence by the institutions theoretically best-equipped to help a community in times of crisis leads to a breakdown of the public’s trust in that institution. Contestation of illness in crises can also warp or worsen the community’s risk perception and fears about their health or symptoms. Best phrased by Auyero and Swistun, the “people's trust (or lack thereof) in the organizations (governments included) and experts in charge of producing information about risk, those responsible for protecting the public, and the producers of hazards are directly relevant for risk perception” (2008, 359). If a community cannot trust those in charge of their protection and aid, like the corporate, government, and healthcare organizations in East Palestine, then they feel even less safe, even more at risk, during and after a disaster such as the train derailment.

What’s more, the cases of contested illness in East Palestine healthcare expose existing infrastructural and systemic shortcomings. According to Rajan’s 2023 work Risk, Disaster, and Vulnerability, “when hazardous events occur against the backdrop of social stratification, the impact of any physical trigger—such as… a chemical spill or a nuclear accident—on human populations is magnified, reflecting both the physical trigger and the organization of the society” (2023, 88). This can be seen in East Palestine in how the community was forced to mobilize and advocate for themselves as the infrastructure and institutions in their community could not aptly provide for their needs. Rajan asserts that “disasters can alienate communities along existing fault lines, reflecting preexisting power relations, relationships between people and the state, and political consciousness (...) Disasters therefore have the potential to foster social, economic, and political change” (2023, 89-90). In the case of East Palestine, for example, the derailment disaster resulted in social and political mobilization across the community.

"East Palestine Lives Matter"

A hand-painted wooden sign in a storefront in East Palestine referencing the "Black Lives Matter" social movement and slogan

"East Palestine is a cautionary tale- this could have happened anywhere."

A Call to Action: The Catalyst for Political Mobilization

The destabilization and uncertainty caused by the derailment inspired an urgency to mobilize and take action in the East Palestine community, perhaps most effectively evidenced by Misti Allison’s mayoral campaign and community involvement. Taking issue with the lack of transparency by the local government, Allison took it upon herself to bring health to the forefront of East Palestine policy. During our interview with Allison, she discussed how some East Palestine residents were turned away from care on the basis of their hometown, and she feared she would be treated the same when seeking treatment for chemical burn symptoms. Though she was not turned away, the doctor said he did not know how to treat her, as there was no protocol or precedent for many of the symptoms faced by East Palestine residents after the derailment. Stories like Allison’s are frequent in her community, but her local politicians were not addressing healthcare issues as they mounted in the aftermath of the disaster. As Allison noticed the ambivalence regarding healthcare by her local politicians and that the mayor at the time had not filed for a reelection campaign, she filed her application to run for mayor of East Palestine, in hopes of bringing light to health problems and safety concerns like those plaguing her own family.

Allison did not win her mayoral race, though she only lost by a small margin of 192 votes, but she expressed no disappointment at her loss in our interview. She stated that she was glad she did not get elected as it has enabled her to continue independent research into the effects of the disaster and to advocate for East Palestine freely without external pressures. Allison has also been heavily involved in filling “gaps in knowledge” left by lackluster EPA and Norfolk Southern chemical and health testing. She found there had been no comprehensive indoor air testing in East Palestine after the derailment, and that many air detectors used in the testing were not sensitive enough to detect butyl acrylate, one of the chemicals released in the disaster. “You can’t find what you don’t look for,” she said about the absence of certain crucial data, including medical testing for first responders and residents with chemical exposure symptoms. The donation of dozens of air monitors to East Palestine was arranged, and the findings were significant and concerning, leading to an additional round of testing with more sophisticated air monitors. All of these research initiatives were organized and funded by Allison and independent researchers, not the EPA or Norfolk Southern, who continually refuse to assist in further air quality tests or provide any medical testing for residents. While Allison’s air monitor project is a profound display of citizen science mobilization, it ultimately reflects yet another set of frustrations and unanswered questions for the East Palestine community.

It is also worth mentioning the ways in which mobilization within the East Palestine community has reverberated far outside the confines of the village. Both Kiger and Allison mentioned in their respective interviews their beliefs that the derailment was a primary motivator in the proposal of the Railway Safety Act of 2023, as well as the increasing pressure on the EPA to review and ban the production of vinyl chloride. This demonstrates that the East Palestine train derailment sparked mobilization not only in the affected community but also on a national scale. The legacy of East Palestine could very well end up as one of progress and change rather than one of chemical exposure and uncertainty.

"EP Strong"

One of many "EP Strong" signs in a storefront window on East Palestine's main street

"Fix Spineless DC"

A campaign sign for Dr. Rick Tsai, an East Palestine chiropractor

"EP Strong"

The same message periodically rolls across the digital sign at the entrance to the community park

Community Engagement En Masse

On our research trip to East Palestine in April 2024, we saw examples of community engagement nearly everywhere we went. “EP Strong” signs are ubiquitous in front of homes and in storefront windows, the message pushed onto businesses’ reader boards and scrolling along the digital sign outside of the community park. There were also political signs in some residential yards for the local chiropractor’s campaign for Congress, as well as signage with slogans like “East Palestine… we won’t be derailed” and “We are East Palestine- Get ready for the Greatest Comeback in American history.” These signs did not appear weathered and old, these were not artifacts from a pre-derailment East Palestine. The signs all looked clean and new, presumably placed periodically throughout town as residents purchased or had them made.

Many of the examples of mobilization we saw during our visit seemed like direct results of the continued chemical exposure symptoms, as private health clinics are now common around East Palestine. One such clinic was a residential home a few blocks from the main street containing most businesses and other clinics. This home, flanked by similar unassuming, single family homes, stood as a gray house with blinds shuttered, surrounded by numerous signs reading, “East Palestine Clinic,” “Walk-Ins Welcome,” and even “Flu Shots.” Another clinic, this one a more traditional business on the main street in town, also touted “Walk-In Service Now Available!” and “No Appointment Necessary,” establishing a theme. Most of the clinics in East Palestine proper seemed to be focused on walk-in service, which could be a result of the lack of service or fear of judgment associated with many healthcare providers around the region as discussed by Misti Allison regarding her and others’ experiences with medical care after the derailment.

Still Growing

Another "EP Strong" message, but this time painted in a child's handwriting on the side of a planter box in a community sensory garden

"East Palestine Clinic"

A residential home used as a clinic for walk-in patients and other services like flu shots

Looking to the Future

In summary, the Norfolk Southern train derailment in East Palestine serves as a prime example of contested illness and toxic uncertainty created in a community in the aftermath of a chemical disaster, along with subsequent political mobilization out of necessity. Contestation of health issues is rife in the community, with residents suffering numerous symptoms, often longterm and perisistent, without answers or relief from medical professionals. The people of East Palestine remain frustrated and unsure about their own health and futures over a year after the train derailment. This uncertainty and frustration has sparked a wave of social mobilization across the community, with residents like Misti Allison running for political office, taking part in citizen science initiatives, and engaging with the rebuilding of the community in general. The actions out of East Palestine have also contributed to increased safety efforts on a national level, motivating the Railway Safety Act of 2023 and the potential review and ban of vinyl chloride by the EPA.

There is still much to be done for the community of East Palestine, however, as the residents remain without answers, and the major players involved- government agencies and Norfolk Southern- remain unwilling to truly, tangibly help in the most important ways. The residents of East Palestine need long term medical care and testing made available and accessible to them to identify and mitigate the potential future effects of the chemical exposure faced by the community. The people of East Palestine deserve closure- they deserve answers to their questions about their family’s safety, solutions for their symptoms, and further reparations for the fear, illness, and economic loss suffered by this community at the hands of Norfolk Southern’s negligence. The government, at local and federal levels, as well as Norfolk Southern, the corporation most responsible for this disaster, must provide avenues for finding answers like healthcare and medical testing to the residents of East Palestine, and give them a path back to the security and certainty that was taken from them when the train derailed.

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