Individualized environments,individual cures: An examination of Lyme disease activism in Virginia

Abstract

Doctors, patients, and public health professionals widely recognize that certain physical environments are more conducive to the emergence and spread of Lyme disease. However, ecological solutions to the spread of the disease are rarely pursued. Drawing on interviews with Lyme activists, politicians, and state and local administrators dealing with Lyme disease related issues as well as an analysis of Lyme disease legislation in the state of Virginia, we examine why solutions to Lyme disease most often focus on expanding individual choices for diagnosis and treatment over changing the environments that enhance the risk of Lyme disease. We argue that the emergence of Lyme disease in a neoliberal society pushed debates on how to best deal with the disease away from its underpinning environmental causes and into individual human bodies.

Keywords

Lyme disease contested illness embodied health movements neoliberal subjectivity

Introduction

Lyme disease is the most commonly reported vector borne illness in the United States. Over 30,000 cases of the disease are reported to the Centers for Disease Control (CDC) annually, but most cases go unreported. The CDC (2019) estimates that approximately 300,000 people contract the disease each year. Scientists, doctors, public health professionals, and patients in endemic areas have long recognized that the risks of contracting Lyme disease are higher in environments conducive to the presence of blacklegged ticks. However, their responses to such risks have largely entailed the promotion of Lyme disease awareness and the expansion of individual treatment options.

In this manuscript we ask why public responses to Lyme disease have rarely sought to address the ecological conditions that are known to increase the prevalence of the disease. We argue that the emergence of Lyme disease in a neoliberal society pushed debates on how to best deal with the disease away from its underpinning environmental causes and into individual human bodies. More specifically, as Lyme disease became what some scholars refer to as a contested illness, doctors and patients focused more on the diagnosis and treatment of the disease in the human body than on the prevention of the disease in society writ large. When prevention was addressed, it focused upon measures that individuals could take to decrease their personal risks of contracting Lyme disease. As a result, very few attempts have been made to alter the ecological conditions thought to be contributing to increases in the disease.

To make this argument, we integrate the insights of scholars studying contested illnesses and embodied health movements (EHMs) with those examining the ways in which forms of neoliberal subjectivity affect human health and well-being. Scholars of EHMs usefully explore why those afflicted by a contested illness collectively mobilize (Brown et al., 2012; McCormick et al., 2012; Shepard et al., 2002). In addition, scholars examining neoliberal subjectivity in the field of health care more broadly have demonstrated how the responsibility for illnesses has become increasingly individualized (Alkon, 2014; Allen et al., 2003; Guthman and Brown, 2016; MacKendrick, 2018). Integrating these approaches provides a way to understand why the demands of EHMs focus upon individual treatments and, in our case, the focus of Lyme activists on diagnoses and treatment over environmental causes.

Contested illnesses, health movements, and the risk society

Contested illnesses “are diseases and conditions that engender scientific disputes and extensive public debates over environmental causes” (Brown et al., 2001: 236). Scholars studying contested illnesses largely view environmental causes as exposure to toxic substances in people’s homes, neighborhoods, and/or workplaces. Diseases thought to be caused by such environmental harms are labeled as contested illnesses because they are frequently emmeshed in “etiological uncertainty,” meaning the link between the disease and toxin(s) has not been scientifically proven (Brown et al., 2000). Classic examples of contested illnesses include Lois Gibb’s struggle to link a leaking landfill in Love Canal to her child’s asthma (Gibbs and Levine, 1982) and the fight of residents of Woburn, Massachusetts to link childhood leukemia to contaminated water wells (Brown and Mikkelson, 1990). However, diseases with known exposure-to-illness links are also occasionally contested. For example, despite the proven link between exposure to radioactive wastes and a host of illnesses, Cable et al. (2008) have demonstrated how workers’ illness claims at a nuclear weapons complex became contested.

Given the indirect and difficult to prove links between contested illnesses and their environmental causes, they often become embedded in struggle and form the foundations of what scholars call health social movements (HSMs) and embodied health movements (EHMs). HSMs form around contested illnesses to challenge medical policy, politics, belief systems, research, and practice. As a subset of HSMs, EHMs are largely composed of people inflicted by a contested illness and others who are affected by it, such as family members. For these people, a contested illness is part of their everyday lived experiences. In EHMs, such individuals’ personal experiences with a contested illness become a collective experience. In the process, participants collectively learn about and challenge the institutional and political economic structures that cause and define a contested illness and its proposed methods of prevention and treatment (Brown et al., 2012: 16).

A unique characteristic of EHMs is that they challenge scientific and medical knowledge through both participants’ firsthand bodily illness experiences and the use of new or alternative science. EHMs thus frequently question the dominant epidemiological paradigm which privileges scientists and doctors as the authoritative creators and sources of knowledge about human health and illness. However, frequently seeking out treatment within the mainstream biomedical community, EHMs depend upon scientific explanations of disease and scientific evidence demonstrating causation. Within this context, EHMs often work with sympathetic scientists and doctors to research and treat their illnesses in unconventional ways. In addition, they frequently utilize citizen science alliances to bring activists, scientists, and doctors together to both push the research surrounding contested illnesses in new directions and have it accepted as legitimate by the mainstream scientific and medical communities (Brown et al., 2012; McCormick et al., 2012; Shepard et al., 2002).

While EHMs engage in collective action, they emerge in part as a response to the individualization of an illness experience. Scholars of contested illnesses and EHMs often capture the individualization of an illness experience by seeing it as a product of the “risk society” (Brown et al., 2012: 25; MacKendrick, 2018). In the risk society, industrial and technological advancement created an array of unknown and unintended environmental hazards that pose dangers to human health (Beck et al., 1992). Unable to completely avoid or escape such hazards, people have developed a distrust in the institutions—in particular science and government—that created them. With such distrust occurring alongside the tendency of mainstream medicine to diagnose and treat illness as emerging from individual behavior and within individual bodies, people are led to believe that their illness experiences are their own and/or the solution to it has to be found outside of the institutional confines which they believe are the cause of their illness.

Scholars often portray EHMs as a means to overcome such individualization. Unable to find a cause or cure within the confines of mainstream medicine, individuals seek out alternative explanations for their health problems, find others suffering from common ailments, and in turn organize collectively to eliminate or address the environmental causes of contested illnesses at a societal or community level (Brown et al., 2012). However, there is no reason to assume that EHMs will necessarily push to eliminate the environmental harm they see at the root of their problems. As scholars of consumption demonstrate, collective action based upon concerns over health frequently results in the promotion of individualized solutions to environmental hazards and risks (Guthman and Brown, 2016; MacKendrick, 2018, 2010; Szasz, 2007).

Market-based avoidance of environmental harms in health movements

While scholars of EHMs demonstrate how a common contested illness experience can result in collective action, scholars of consumption have shown that common concerns over the ill-health effects of some substances or activities have led people to seek out individual ways to avoid potential environmental harms. In particular, individuals alter their consumption practices and purchasing power to avoid potential environmental harms. Seeking to explain this behavior, some scholars have classified such actors as consumer subjects engaging in forms of neoliberal governmentality.

Social scientists have conceptualized individual and consumption practices to protect one’s body against societally created environmental ills in a number of ways. MacKendrick has referred to such practices as “precautionary consumption” and “contaminant avoidance” (MacKendrick, 2010; MacKendrick and Stevens, 2016). Szasz (2007) has labeled such actions as partaking in an “inverted quarantine.” And DuPuis (2000) calls it part of a “Not in My Body” movement. Differences exist between such terms, but the general idea underpinning each is that people use their individual purchasing power to avoid certain environmental harms and toxins by buying “green.” For those engaging in such acts, it seemingly provides a sense of self-empowerment and control over environmental and societal risks that are difficult to escape.

While exercising one’s purchasing power could simply be seen as a rational way to avoid potential toxins and environmental harms, a number of scholars have conceptualized the ability to buy out of individual body burdens as part of a broader neoliberal shift in society (Alkon, 2014; Allen et al., 2003; Guthman and Brown, 2016). Drawing on notions of neoliberal governmentality (Ong, 2006; Rose, 1999), such scholars see the exercise of choice through processes of consumption as a freedom, but one that is limited in both scale and scope. While people can utilize their purchasing power in an attempt to address their ethical and political concerns, their effectiveness is frequently constrained to the individual and by how much purchasing power they have. Within this context, toxins and environmental harms become viewed as manageable risks for those who can afford it, but the broader causes of such conditions largely go unchallenged.

These observations by critical scholars of consumption can be used to better understand HSMs and EHMs. On the one hand, such observations can help shed light on the ways and reasons participants in HSMs and EHMs seek out individual solutions to the environmental problems underpinning contested illnesses. For those with or who fear a contested illness, engaging in precautionary consumption may be an adequate solution to their problems and/or politically more viable than engaging in collective action. On the other hand, the observations of critical scholars of consumption can be used to understand why the policies sought out by HSMs and EHMs may promote individual over societal solutions. As Guthman and Brown (2016) demonstrate, even when activists engage in forms of collective action in the public political arena, they still often uphold their consumer subjectivities. Within this context, participants in HSMs and EHMs may seek to collectively change policy, but the policies they advocate may be constrained by their perceptions of what is possible. Shaped by neoliberal forms of governmentality, such movements may thus seek out policy prescriptions that expand the realm of choice for individuals afflicted by a contested illness while not addressing the broader societal or structural causes of the illness.

Lyme as a contested illness

Lyme disease is caused by the spirochete bacteria Borrelia burgdorferi. It is most commonly found in semi-wooded areas or what ecologists refer to as fragmented forests (Allan et al., 2003; Horobik et al., 2006). Such places are frequently home to the disease’s vector the Ixodes scapularis, more commonly known as the blacklegged or deer tick. Fragmented forests are also inhabited by a number of the tick’s hosts, including its primary breeding grounds—the white-tailed deer—and the most competent Lyme disease reservoir—the white-footed mouse. Such forests’ floors are often covered with moist leaf litter that serve as an insulating blanket for ticks and some of their smaller hosts during dry and cold spells. In addition, fragmented forests often have large edge to interior forest ratios, smaller patch sizes, and a degree of isolation from other treed areas. In such places, sunlight can more easily reach the forest floor, helping vegetation sprout that in turn serves as a lush green food source for tick hosts (Ostfeld, 2010).

A number of unknowns still exist about the ecology of Lyme disease, but most people who live in Lyme inundated areas understand that ticks carry the disease and that people are more likely to contract it in wooded areas than in concrete jungles. However, debates about Lyme disease’s discovery and its means of diagnosis and treatment have made it into a contested illness. Since it purportedly emerged in the United States, the disease has been embroiled in controversy between scientists, doctors, patients, and politicians and has spurred an array of EHMs.

While long present in North America and previously diagnosed under different names across the globe, the disease became known as Lyme after a cluster of children and several of their family members became inflicted by a mysterious illness near Old Lyme, Connecticut in 1975. The patients had a number of common characteristics. First, several of the patients developed a bull’s-eye patterned lesion, known as an erythema migrans rash, that was followed by joint pain. Second, the patients tended to live near town, but in more wooded ex- and suburban areas (Elbaum-Garfinkle, 2011). Suffering from joint pain, doctors originally diagnosed the patients with rheumatoid arthritis. However, with rheumatoid arthritis being a relatively rare autoimmune condition, particularly in younger populations, two of the children’s mothers—Judith Mensch and Polly Murray—independently questioned the diagnosis and began to informally gather their own epidemiological data from neighbors and the surrounding community. After contacting the Connecticut Department of Health with their data, they were referred to work with Yale rheumatologist Alan Steere (Weintraub, 2013).

At a close by naval medical center, doctors observed similar symptoms in several service members around the same time. Drawing on existing studies in Europe, the naval doctors surmised that the disease was transmitted to humans through the bite of a tick and successfully treated the ailment with antibiotics. However, Steere was not convinced the disease was caused by bacteria and instead thought he had discovered a new disease (Aronowitz, 1991). Even after his research team conducted a formally controlled and blind study that confirmed that antibiotics were an effective treatment, Steere refused to endorse the use of antibiotics except as a means to resolve erythema migrans rash that is commonly present with Lyme disease (Weintraub, 2013). It was not until 1982 when Willy Burgdorfer identified the Lyme spirochete bacteria—B. burgdorferi—in the midgut of ticks that antibiotics were definitively confirmed as the proper treatment for the disease.

Despite the discovery of the causative agent of Lyme disease, debate still exists over how the disease should be diagnosed and treated. On the one hand, blood tests for the presence of Lyme disease are not 100% accurate. Enzyme immunoassay tests that detect antibodies to B. burgdorferi sometimes provide false positive results (Aronowitz, 1991). In addition, the test may not be positive in the early stages of the disease even if a person has Lyme (CDC, 2019). While the CDC recommends that doctors treat patients’ clinical symptoms even if a Lyme disease test is negative, this does not always happen. On the other hand, the recommended two to four-week oral antibiotic treatment for Lyme does not always rid a patient of their ailments. Even if the B. burgdorferi bacteria has been eliminated in the body, symptoms may persist for months (CDC, 2019). In addition, some doctors have reported that cases of Lyme disease detected in later stages are occasionally more difficult to cure with the conventionally recommended duration of antibiotics (Weintraub, 2013).

The expansion of Lyme disease geographically to new places has further compounded the problems surrounding its diagnosis and treatment. The nonspecific symptomatology of the disease—in particular for patients who do not develop an erythema migrans rash—makes it difficult for unfamiliar doctors to diagnose. In addition, in places where the disease is new and/or less common, doctors are more likely to depend upon the results of a blood test—most notably an enzyme-linked immunosorbent assay (ELISA)—before making a diagnosis, thus overlooking clinical symptoms and lowering the likelihood of proper treatment for patients who may have Lyme disease but test negative (Wormser et al., 2006).

The scientific debate surrounding Lyme disease, the lingering symptoms of the illness in some people, and the inability of the afflicted to always receive a proper diagnosis and treatment has made it the focus of numerous EHMs. Lyme disease support groups serve as the foundation of these EHMs. Such groups can be found in every state across the United States. While Lyme disease EHMs most often form from the ground up, more centralized and formal organizations exist in some states with multiple local groups. Such organizations primarily serve to disseminate information about Lyme disease and to connect people who suffer from it. They also bring Lyme disease activists together and have effectively lobbied some state politicians to forward policy proposals to aid those suffering from the disease. But while most participants in Lyme disease EHMs understand the diseases’ ecology, few actually seek to address the ecological factors driving the spread of the disease to new locations. Indeed, EHM efforts often seem to result in new forms of neoliberal governmentality, pushing for policies that raise awareness and expand the diagnosis and treatment options available to individuals but looking past solutions that address the broader societal and ecological causes of the disease.

The case, methods, and data

To better understand why Lyme activists focus more on the individual than the societies and ecologies in which they live, we examined the emergence of Lyme disease as a contested illness in the state of Virginia, the subsequent formation of Lyme EHMs, and the policy prescriptions such EHMs sought to put into place. Virginia serves as an excellent case through which to examine such phenomena for a number of reasons. First, Virginia is 1 of only 16 states that is classified by the CDC (2019) as a place of “high incidence,” meaning that at least 10 confirmed cases per 100,000 persons have been diagnosed over the previous three years. Lyme disease is thus an annual threat and health concern for the state’s citizens. Second, Lyme disease is relatively new to the state. While drawn into the national spotlight in 1975 with its clustered emergence near Lyme, Connecticut, Lyme disease was relatively uncommon in Virginia until the 1990s. In addition, it has only recently begun to emerge in the southernmost parts of the state. Focusing on the case of Virginia thus allows us to examine EHMs and their policy recommendations in the making. To examine this case, we analyzed two complementary sets of data.

Seeking to understand the motivations of Lyme activists and the policies they supported, we first performed semi-structured interviews with representatives of EHMs, politicians, and bureaucratic practitioners who were involved in and/or affected by Lyme disease legislation in the state of Virginia. EHM representatives were chosen based upon their prominent roles in the Lyme disease activism community. Politicians were chosen based upon their sponsorship of Lyme disease legislation. State and county level administrators were chosen because they served on the state of Virginia Lyme Disease Task Force and/or regularly dealt with issues related to Lyme disease.

Utilizing content analysis, we also examined state level legislation on Lyme disease. While we focus herein on the data from the state of Virginia, the data are part of a broader database of proposed and passed state legislation on Lyme disease in all 50 states. We collected the data through the Nexis Uni database of “Statutes and Legislation” from 1 January 1990 (the earliest search date available) to 1 May 2019. More specifically, we searched for “Lyme disease” in the “Bill Text” advanced search option. In total, the search produced 3172 hits across all 50 states, 72 of which pertained to Virginia. The oldest piece of legislation in the database mentioning Lyme disease in Virginia is from March 1998 while the newest is from March 2019. Many of the pieces of legislation that appeared were for the same bill or resolution. Of the 72 hits, 34 had different bill or resolution numbers. Taking this into account, we analyzed each bill or resolution identified with the same number only once. However, when similar pieces of legislation were introduced in the House of Delegates and Senate and/or across multiple legislative sessions under different bill or resolution numbers, we analyzed them all in order to account for the fact that they were potentially introduced by different political representatives and for the possibility that EHMs were acting on multiple fronts to achieve a certain goal. Similar pieces of legislation also often contained minor differences that we did not want to overlook. Seeking to identify the main goals of each bill or resolution in our database as a whole, we inductively coded the legislation along 12 different lines (see Table 1). Some pieces of legislation focused solely on a single issue, many focused on several. As a result, a piece of legislation could be coded as having multiple goals.

Table 1.

Coding schema for Lyme disease legislation.

Code	Description
Long-term antibiotic use	Allow for the use of antibiotics beyond CDC guidelines to treat Lyme disease
Enhanced physician protection	Prohibit physicians who used strategies outside of the CDC guidelines to treat Lyme disease from suffering punishment and/or losing their license
Patient notification of efficacy of Lyme tests	Require doctors to provide patients with a notification document stating that Lyme tests are not always accurate
Officially reclassifying or reporting the disease	Place Lyme disease on state level disease lists and/or officially count for both proven and probably cases of the disease in state level numbers
Insurance mandate	Require health insurers in the state to cover Lyme disease tests and treatments, including treatments that are outside of the CDC guidelines
Workers compensation	Require employers to provide workers compensation to employees who potentially contract Lyme disease while on the job
Committee or task force on Lyme disease	Form a special committee or task force to examine the impacts of Lyme disease on the state’s citizens
Ecological solution	A proposal to decrease Lyme disease by addressing an environmental factor
Awareness	Publicly create an awareness or education campaign
Research	Fund additional research for Lyme disease
Other	Other

The formation of neoliberal Lyme Subjects, EHMs, and landscapes

For over a decade after its emergence in the northeastern United States, Lyme disease was not thought to exist in Virginia. Plenty of ticks could be found in the mid-Atlantic state, but the blacklegged tick that carried Lyme disease was rare. However, as the landscape of Virginia increasingly became sub- and ex-urbanized, it not only housed increasing numbers of humans, but also increasing numbers of blacklegged ticks and their vertebrate hosts. In these sub- and ex-urban spaces, Lyme disease patients became neoliberal Lyme subjects who organized to implement an array of neoliberal policies in an attempt to help themselves and others afflicted by the disease.

Neoliberal Lyme subjects in the making

Those effected by Lyme disease are not purposeful neoliberal subjects. Instead, they are directed and drawn toward individualized solutions by the societal and institutional contexts in which they live. In particular, the symptomology of Lyme disease, the guidelines for diagnosis and treatment, and the broader mainstream medical complex have frequently caused those afflicted by the disease to individualize the problems associated with it. In the words of one of our interviewees who self-identified as suffering from chronic Lyme, “it is a very isolating disease.”

The simplest explanation for the isolating characteristics of Lyme disease is its nonspecific symptomatology. With symptoms similar to other diseases, people often do not know that they have Lyme disease. As a sympathetic doctor informed us: “The classic description is that I got the flu and I’ve never been well since … The majority of people never remember being bitten by a tick and the majority of people never remember an erythema migrans rash.”

Reflecting firsthand on dealing with the disease, a Lyme activist confirmed such an experience stating:

Two of my kids were diagnosed with Lyme … And I, you know, thought one at first had strep throat or something like that and didn’t pay a lot of attention to it. He appeared to be struggling, but I didn’t really understand it.

With many nonspecific symptoms, it is often difficult for individuals and doctors to recognize when patients are afflicted by Lyme disease. As one public health professional noted, “the challenge with Lyme is that the early symptoms go away. So if you’re not looking for it, if you’re not going to see a doctor, you won’t get diagnosed.”

According to Lyme activists, the problem of misdiagnosis is further compounded by the dependence of doctors on inaccurate tests. While the CDC recommends doctors treat the clinical symptoms of Lyme, they also recommend the use of a two-part testing regimen to determine if a patient has the disease. Like all medical tests, a degree of error exists. As a result, Lyme patients and activists often point to the tests as problematic. As one Lyme activist stated: “The average doctor thinks, you give the ELISA test and that’s the end of that … But using this stupid ELISA thing is causing doctors acting in good faith to believe that they’ve ruled out Lyme.”

As a sympathetic doctor we interviewed further noted:

If an individual doctor who is working in a run-of-a-mill clinic, not that familiar with the concepts, they’re gonna defer to the experts, but if the experts are providing misinformation, you’re in trouble. That’s what exists right now … you have most clinicians who aren’t familiar with the nuances of this.

Within this context, the nonspecific symptomology of Lyme can work in tandem with the conventional tests used to confirm the disease to result in a misdiagnosis.

Lyme activists also point to the conventional two to four-week oral antibiotic treatment for the disease as problematic. On the one hand, activists believe the form and length of the CDC recommended treatment is not sufficient. As one Lyme activist noted, “Two weeks of low-dose medication doesn’t do shit and you’re kinda … you’re just kind screwed over.” On the other hand, activists and sympathetic politicians both spoke of how state regulation and insurance companies could shape doctors’ decisions to follow conventional treatment. As another Lyme activist noted. “There are doctors that want to treat Lyme differently but they’re afraid of losing their licenses. They’re afraid of the insurance companies.” According to such activists, doctors exist who want to use more aggressive and longer-term antibiotics for patients suffering from “chronic” or “late-stage” Lyme disease. However, such doctors do not always do so because they do not want to be flagged by or face potential retribution from state medical licensing boards and insurance companies.

The nonspecific symptomatology and the multifaceted difficulties associated with diagnosis and treatment can make Lyme disease into a very individualized experience. When a patient has Lyme and goes undiagnosed, they are frequently led to believe that their suffering is of their own making, a common experience of those with contested illnesses. As a member of the Virginia Lyme Disease Task Force stated,

It absolutely gets pushed onto the individual and a lot of times it’s in the context of, no one will help me, no one believes that there’s something really wrong. Everyone thinks that I’m some … that my kid or myself is somehow making this up in their head.

At the same time, patients who are misdiagnosed are led to believe they have an uncurable disease. In the words of a Lyme activist who also worked as a public school health professional:

The child will come in, will have had a known tick bite. Maybe had a rash, maybe didn’t. Maybe was tested for Lyme disease and found negative and then over the course of the next year develops fibromyalgia, chronic fatigue syndrome, POTS – Postural-orthostatic-tachycardia syndrome. All these things with no known causes and no known cure, with a known tick bite in their history. And the parents are kind of like, know that it doesn’t make sense. You know. They’ve got about five different doctors and none of them are looking at a bigger macro picture … So it ends up falling in the individual’s lap.

Un- or misdiagnosed, patients are led to believe there is nothing that can be done for them and thus left isolated in their search for a cure to their ailments.

Shunned by the mainstream medical establishment but still suffering, the un- and misdiagnosed become individually responsible for finding a proper diagnosis and/or non-conventional treatment. Activists, politicians, and public health professionals alike all emphasized how people bit by a tick and suffering from Lyme disease often have to take personal responsibility and seek out what are referred to as “Lyme-literate” doctors for proper treatment. As one public health professional and infectious disease expert stated:

When somebody came in with an attached engorged deer tick, we would tell them go see your doctor. And on the side, I would tell some of them, if your doctor says no treatment, go see another doctor. Get a second opinion … You want to do presumptive treatment if you can.

As a politician from Northern Virginia further noted:

I just had a phone call today from a close friend of mine whose family members have been diagnosed [with Lyme]. He knew that he needed to find somebody that was knowledgeable about this and so they went through several different physicians until they found one that obviously was knowledgeable about that and they’re using him to help with their issue.

However, the choice of becoming a medical consumer to find a solution was not available to all. Lyme literate doctors often prescribed treatment that was not covered by insurance companies and/or avoided scrutiny by not accepting insurance at all. As one member of the Lyme disease taskforce noted, “there are plenty of people who cannot afford to see someone that’s not on their insurance.”

Suffering from an illness largely on their own and forced to take such personal responsibility to find a solution, many people suffering from Lyme disease become unintentional neoliberal subjects. Abandoned by doctors and insurance companies, they are forced to bear and find solutions to individual body burdens on their own. Those who can afford it sometimes individually navigate the medical establishment as medical consumers seeking out potential cures to their ailments. Finding Lyme literate doctors, the suffering who are able pay out of pocket for unconventional treatments such as intravenous long-term antibiotics. However, not all people who go un- or misdiagnosed merely become isolated neoliberal Lyme subjects. Some of the afflicted also form, join, and find help from EHMs.

Neoliberal medical consumers in EHMs

Lyme disease activist groups can be seen as EHMs. They are built by making the individual experience of Lyme disease into a collective experience. They challenge the institutional and political economic structures that define the disease, its diagnosis, and treatment. And they work with citizen scientists and sympathetic doctors to push to reconceptualize Lyme disease and how it should be approached in the scientific and medical communities.

Lyme activist groups seek to turn the disease from an individual into a collective experience by providing space for people to talk and find information about their illness that is not provided by the mainstream medical community. As one Lyme activist noted:

Our main role is just support and resources. We always have monthly meetings and then there’s kind of like a little network that develops. And that’s what we do. So it’s mostly just support and hooking up people with other Lyme patients and physicians.

In Virginia, most Lyme EHMs are grassroots organizations founded and led by a person who is or has been affected by Lyme Disease. However, many receive non-monetary organizational support from the National Capital Lyme Disease Association (NatCapLyme), an all-volunteer nonprofit based in Washington, D.C. There are currently 10 affiliated NatCapLyme chapters in Virginia, with five other chapters in Maryland, North Carolina, and Washington, D.C.

NatCapLyme (2019) not only links local EHMs and Lyme patients with one another, but it also provides a virtual clearinghouse of information for those who may be un- or misdiagnosed with the disease. Doing so, it has sought to help redefine Lyme disease by increasing awareness amongst doctors, politicians, and the general population of the potential errors in testing, the consequences of late diagnosis, and the efficacy of non-conventional treatments. The primary tactics through which this has been done is through its website and hosting awareness campaigns.

NatCapLyme also serves as a centralized organizing body that has sought to address a number of the concerns of Lyme patients—from misdiagnosis to alternative treatment options—by mobilizing local Lyme EHMs to lobby politicians on an array of legislative changes. As a state level public health administrator stated when discussing hearings in Virginia about Lyme disease: “Lyme green shirts were present in the General Assembly … they made their presence known … They organized together. They found an advocate, you know, to carry their bill and then they made their presence known during the meetings and sessions.” Collectively drawing upon their personal and familial experiences, Lyme EHMs in Virginia were able to influence policy. In the most basic sense, they convinced politicians to pay attention. As one politician noted:

Certainly you had a group of very active citizens, some of which were constituents, you know, who would describe their perspective and what they thought needed to happen … As far as citizen activists, certainly constituents are voters … They have a very strong role in shaping my outlook.

Furthermore, the presence of Lyme EHMs made it so that more powerful lobbying groups, such as the Medical Society of Virginia, could not get legislators to immediately dismiss calls to conceptualize and treat Lyme disease differently than recommended by the CDC. As a doctor who testified before the Virginia House of Delegates in support of the issues forwarded by Lyme EHMs told us:

[They’re] crucial, because particularly now with social media, the influence that individuals have, whether they be family members or they themselves ill, can be profound. In fact, when I alluded to speaking to legislators in Richmond for legislation, initially the legislators said that they were going to reject it entirely. But they decided to table it because of the number of people who came, who were there, they couldn’t outright reject it because there was just too much interest in it.

Within this context, Lyme EHMs successfully changed the discussions around Lyme disease in the state.

In response to Lyme EHMs’ efforts in Virginia to draw more attention to the problems associated with the disease, public health professionals at the county and state level routinely spoke of how they sought to increase awareness about ticks and tick-borne disease. Such efforts included attempting to alert people to the threat of tick bites through signage in high risk areas as well as through informational campaigns in public spaces. However, such educational efforts largely focused on prevention, making people aware of ticks and encouraging them to keep ticks off their bodies. As one public health official noted, our goal is to make daily tick checks “just like brushing your teeth.” However, Lyme EHMs are interested in more than prevention and the promotion of a general awareness about ticks and tick-borne disease.

Seeing conventional testing methods as prone to error, Lyme EHMs pushed for a policy to make patients aware to the possibility of faulty results. As one Lyme activist stated, patients need to know

there’s no definitive test, because all they were doing were testing and ignoring … you could have had classic symptoms of Lyme disease … you could bring the tick in with you and have a classic bulls-eye rash but if the test came back you didn’t have it, they’d say that must not be it.

In response to such a belief, Lyme EHMs lobbied to pass a bill that required doctors to provide patients who were tested for the disease with information about the blood test’s false negatives.

Lyme EHMs also pushed to implement policies to make long-term antibiotic treatment easier for patients with late stage or chronic Lyme. To do so, they proposed three different types of bills. First, they sought to have it acknowledged that long-term antibiotic treatment could be useful. Second, they pushed to make doctors immune from liability and to remove the threat of potentially losing their medical licenses for prescribing unconventional Lyme treatments. And third, they attempted to make it a requirement that insurance companies cover long-term antibiotic and more unconventional Lyme treatments.

Amongst the 35 pieces of proposed legislation pertaining to Lyme disease in Virginia (see Table 2), Lyme EHMs directly lobbied in support of 17. An additional seven pieces of legislation that focused on the creation of the Virginia Lyme Disease Task Force and Lyme Awareness month were also supported by Lyme EHMs. While proposed legislation to support Lyme disease research was the most common and frequently passed, it was often tacked on to annual appropriation bills. Of the other proposed legislation, the requirement that doctors provide patients with written notification of the potential errors in Lyme disease tests became law, first in 2013 on a temporary basis and permanently in 2019. While legislation making doctors immune from liability and losing their licenses for unconventional Lyme treatments failed to pass, state officials publicly declared they would not prosecute doctors or revoke their licenses if they prescribed long-term antibiotic treatment. Legislation to force insurers to pay for Lyme treatment was proposed in 2019 but failed to become law. Legislation supporting a Lyme disease task force and Lyme disease awareness month both passed when proposed in 2011 and 2012, respectively.

Table 2.

Types of Lyme disease legislation proposed in Virginia from 1990 to 2019.

Code	Occurrence
Long-term antibiotic use	5
Enhanced physician protection	5
Patient notification of efficacy of Lyme tests	6
Officially reclassifying or reporting the disease	5
Insurance mandate	1
Workers compensation	0
Committee or task force on Lyme disease	4
Ecological solution	1
Awareness	3
Research	11
Other	0

While the formation of Lyme EHMs drew patients into broader networks of collective action, the policy recommendations and strategies pursued by these organizations had the effect of individualizing Lyme disease in ways that echoed neoliberal models of rational choice. In Virginia, Lyme EHMs largely worked to enhance individuals’ knowledge about and choice of Lyme tests and treatments. This occurred through awareness campaigns, pushes for doctors to legally disclose problems with Lyme disease testing, and seeking legal access to and protections for the prescription of long-term antibiotic treatments. Each of these actions is useful to those potentially suffering from Lyme disease, but they all largely focus on helping patients to resolve their individual body burdens. In addition, they are largely available only to those who have the time and money to seek alternative tests and treatments not offered by mainstream medical professionals and/or not covered by mainstream insurance companies. By seeking to expand the individual choices of medical consumers, Lyme activists have thus avoided addressing the actual causes of the diseases, constructing Lyme as an individualized ailment combatted through the patient’s own resources and initiative. Demands for collective action are therefore circumscribed in ways that reproduce a neoliberal subjectivity.

Naturalizing the built neoliberal environments of tick-borne disease

EHMs drew attention to problems surrounding Lyme disease and successfully lobbied for several legislative changes, but their proposed policy solutions as well as those of Virginia’s public health professionals largely look past the underlying causes that made the disease a threat to the everyday lives of people. In particular, most proposed solutions do little to address the landscape changes that enhance the presence of and bring humans into contact with ticks and tick hosts.

Ironically, when asked what they saw as the primary driver increasing rates of Lyme disease in Virginia, nearly all of our interview respondents mentioned the impacts of human induced ecological change. As a county level administrator stated when asked what was driving increases in tick-borne disease:

The biggie is simply the land-use patterns, you know. Up until recently, Northern Virginia was, you know, it was mostly these smaller quarter acre lots that were cleared of most trees, and so we’ve gotten better at leaving trees … I wouldn’t say better because it’s probably a bad thing, but now we have larger lots out there in the countryside, you know, where people are living. So I think, you know, a lot of it just simply has to do with our development patterns that expose people more directly to ticks.

As a Lyme activist further noted:

The presence of forest edge is ideal for growing an environment for ticks and the white-footed mice and deer, which are kind of the three magical creatures. They all thrive in that better than deep forest. And suburban Virginia just creates infinite amounts of forest edge. At my house I’ll have twenty or thirty deer in my yard between six and seven almost every day.

With homes in large lot sub- and exurbia, most of the people we interviewed knew that they lived in an ideal habitat for ticks and tick hosts.

Recognizing the link between Lyme and the blacklegged tick and its hosts, some counties and individuals have sought to disrupt the ecological niche of the disease by culling deer. As large mammals with a prolific population, deer frequently serve as a food source for ticks. Many of our interview respondents also noted that the deer population had increased over the past few decades. In response, counties such as Fairfax County in Northern Virginia have sought to decrease deer density through managed hunts. In addition, the Virginia legislature approved in-season hunting on Sundays with the stated hope of decreasing the deer population and, in turn, tick-borne disease (see Table 2). However, as a county level administrator noted: “We frankly cannot get the population of deer down that far. It would take the national guard, the US army, and all the hunters out there together and I still don’t know if we would get to that level.” Efforts to cull deer to decrease the tick population have thus largely been futile. In addition, deer are incompetent Lyme disease hosts. As a result, they rarely, if ever, carry the disease (Ostfeld, 2010).

Apart from culling deer, few if any ecological solutions have been taken at the state or county level to address Lyme disease. Despite the known link between landscape change and the disease, implementing policies to change the landscape largely remained outside of the realm of imagination for politicians, local and state administrators, and Lyme activists. When asked if zoning and land use were ever discussed as a way to potentially decrease the presence of Lyme disease, our interview respondents all said no. In an attempt to justify why, most people claimed the current land use patterns increased the quality of life for local residents. As a county level administrator stated:

It’s the nature of the county. If you drive through you’ll see a lot of interrupted woodlands. As houses get built into it and the deer predators go away, there are nice paths for everyone to go to and it really is the part of the quality of life in the county … What people want is their quality of life, one way or another. And definitely this is a beautiful county and part of its beauty is being in the suburbs with trees and access to paths and the environment.

As a Lyme activist who suffered from late stage Lyme for nearly a decade further noted: “The problem of course is urban sprawl. That’s something that’s probably not going away anytime soon. I consider myself in that category because I’d rather – you know, I like the suburban – live in a nice wooded area too.” Similar thoughts were reiterated by many of our interview respondents. While recognizing the ecological connections between the built environment and Lyme disease, people’s desire to live in what they perceived of as ‘nature’ seemingly enhanced their quality of life despite the known and increased risk of getting a tick-borne disease.

However, seeing Lyme landscapes as part of “nature” that enhances the quality of life of local communities overlooks how such environments were built. Indeed, the social construction of Lyme landscapes is itself a product of neoliberal policy. As banking and mortgage finance laws shifted in the late 1970s and into the 1980s and aligned with exclusive zoning regulations, large lot sub- and exurbia rapidly expanded. Within this context, new sub- and exurban homeowners created the forest edge preferred by ticks and tick hosts (Kaup, 2018). Seeing such built environments as “natural” and good, few efforts have been made to change the social mechanisms that helped to create the Lyme landscapes in which people become infected. Walled inside of single-family homes sprawled across semi-forested acres, Lyme disease sufferers are prone to frame Lyme as a problem of inadequate medical services rather than the outcome of land redevelopment and capital investment.

De-individualizing political possibilities?

The pursuit of individual solutions to socioecological problems could be seen as more rational or feasible than changing the landscapes in which people live and recreate. Those afflicted by Lyme disease often need a more immediate solution to the sometimes debilitating health problems they face. With activist organizations, online groups, and even some medical professionals drawing attention to potential problems with tests for the disease and proposing long-term antibiotics as a possible cure, an un- or mis-diagnosed person who believed they had Lyme disease would likely seek out any seemingly feasible avenue that could provide an alternative diagnoses and/or lessen their bodily ailments. However, there are a number of alternative political possibilities that could potentially help to alleviate or contain the spread and transmission of Lyme disease.

While ticks and tick-borne disease are often present in more fragmented forests, natural scientists suggest that the type of fragmented forest may matter. In particular, smaller and more isolated forest fragments are thought to be more likely to harbor tick-borne disease. In such places, ecological diversity is often more limited and increased contact rates between infected ticks and the vertebrate hosts can amplify the tick-borne disease transmission cycle (Gaff and Schaefer, 2010; Simpson et al., 2019). For those seeking to decrease the likelihood of Lyme disease, policies promoting less forest fragmentation, fragmentation that does not create small isolated forests, and/or ways to enhance ecological diversity may be useful.

In Virginia, one way to do this is to promote zoning practices that encourage greater density and less sprawl. Many of the counties in Virginia with the highest rates of Lyme disease have long had highly restrictive zoning ordinances that favor the construction and maintenance of single-family homes on large lots of 1 acre or more. As the human population has increased in these places, sub- and ex-urban sprawl has created landscapes more conducive to the spread of tick-borne disease (Kaup, 2018). However, recent policies have been introduced at both the county and state level to promote upzoning on new and existing lots by eliminating single-family home designations and legalizing the use of additional dwelling units for non-family members (Samirah, 2020a, 2020b). Allowing upzoning would not only potentially eliminate small and isolated forest fragments, it could also prevent further sprawl and fragmentation at the edges of suburbia and thus leave larger and less fragmented forest tracts in place.

Another potential land use policy avenue that could create and/or connect larger forests and increase biodiversity rests in the construction of wildlife corridors. As human populations increase and unchecked sprawl occurs, the movement of animals becomes more constrained if not impossible as human made barriers such as roads and fences are built. In response, several regional non-governmental organizations have worked with Virginia legislators to forward the Wildlife Conservation Corridor Act (Bulova, 2020; Marsden, 2020; Oren, 2020). While the stated intentions of such policies are to protect wildlife and prevent traffic accidents (Batha and Otawa, 2013), such corridors could potentially decrease tick-borne disease if designed appropriately. On the one hand, maintaining and connecting larger tracts of forests to one another could enhance species diversity within an area, leading to an increased presence of predators such as coyotes, bobcats, red foxes, owls, and hawks that could decrease deer or mice populations. On the other hand, increasing the home ranges of larger mammals could provide ticks with more feeding options, potentially decreasing the likelihood ticks feed on infected hosts and in turn decrease the spread of disease (Gaff and Schaefer, 2010; Simpson et al., 2019).

Neither upzoning nor the wildlife conservation corridor legislation in Virginia were conceptualized as measures that could potentially lessen tick-borne disease. In addition, the passage and implementation of either is politically fraught. Creating upzoning laws can be controversial given their potential effects on often wealthier single-family homeowners. Given that control of zoning law has historically rested in the hands of city and county governments, the passage of state laws affecting local zoning ordinances is also often seen as legislative oversight (Capps, 2019). As a result, the state level upzoning laws proposed in Virginia in 2020 were almost immediately tabled (Baca, 2020). However, discussions were still ongoing at more local levels (Sullivan, 2019). While the Wildlife Conservation Corridor Act faced less resistance in Virginia, a similar act proposed at the national level drew concern from private property owners who feared the seizure of their land and the potential impacts increased wildlife may have on the ways they currently use their land (Eilperin and Grandoni, 2019). In February 2020, the bill passed in the Virginia Senate and House, but the details of its implementation were yet to be ironed out.

Despite such concerns and opposition, casting upzoning or wildlife conservation corridor legislation as ways to potentially alleviate tick-borne disease could create some unusual—and perhaps winning—alliances. On the one hand, Lyme EHMs have had success at getting difficult legislation opposed by powerful lobbying groups passed. On the other hand, many participants in Lyme EHMs are single-family homeowners who expressed a love for being in nature and/or hunting. While upzoning may be seen to infringe upon their natural surroundings, conservation corridors are intended to enhance them. In addition, if constructed large enough, conservation corridors could also be used safely for hunting at certain times a year, providing a means of amenity recreation and another way to attempt to control the deer population. As a result, pitching upzoning and conservation corridor legislation as ways to potentially reduce Lyme disease could sway some more hesitant sub- and ex-urban single-family homeowners to support such laws. That said, middle and upper class single-family homeowners have long favored enhancing their own access to green space but not that of others (Rudel et al., 2011). With conservation corridor legislation aligning with single-family homeowners' economic interest and upzoning going against it, the likelihood of the former being successfully implemented is greater than the later.

Conclusion

Lyme disease is a contested illness and Lyme activist groups can be classified as an EHM. However, collective forms of organization do not necessarily free people framing their demands in decisively neoliberal terms. Lyme EHMs in Virginia drew attention to the problems surrounding the disease, but their actions largely sought to expand the realm of choice for individuals afflicted by Lyme disease while not addressing the broader societal and ecological causes of the illness. Allured by a vision of suburban landscapes as “natural,” activists and policy makers alike avoided discussions of policies that actively augment the risk of contracting Lyme disease.

In this study, we focused upon the emergence of Lyme disease in Virginia. However, we believe our findings shed important light upon EHMs, their actions, and the socio-environmental relationships in which they are embedded. Integrating the scholarship on contested illnesses, EHMs, and neoliberal subjectivities, we provide a way for scholars to potentially understand why people seek out individual prevention, diagnosis, and treatment options instead of seeking to alter the socioecological factors that may underpin some diseases. In other words, we provide a way to understand how solutions for diseases borne out of environmental change often remain centered on the human body, precluding forms of prevention that involve thinking about our altered environment. Future studies could thus examine the ways in which EHMs treat other infectious diseases and their ecological causes. Future studies could also expand upon our findings by examining Lyme disease EHMs and legislation in other states.

Highlights

Lyme disease is a contested illness embedded in an EHM.

The individualization of Lyme disease pushes the afflicted to focus on individual cures.

The ecological conditions conducive to Lyme disease are widely recognized but rarely addressed.

The individualization of diseases in a neoliberal society directs people away from addressing their societal or environmental causes.

Footnotes

Acknowledgements

The authors would like to thank Matthias Leu and Oliver Kerscher for their involvement in the Socionatural Tick-Borne Disease Research Group and Amy A. Quark for the useful comments and recommendations on earlier drafts of this manuscript

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the William & Mary Faculty Research Grant and the Commonwealth Center for Energy & Environment.

ORCID iDs

Brent Z Kaup

Amanda Sikirica

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