The Social Life of TBI: the Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States

The Social Life of TBI: The Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States

Item Type text; Electronic Dissertation

Authors Duncan, Austin W.

Citation Duncan, Austin W. (2020). The Social Life of TBI: The Embodied and Constructed Meaning of Moderate/Severe Traumatic Brain Injury in the United States (Doctoral dissertation, University of Arizona, Tucson, USA).

Publisher The University of Arizona.

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Link to Item http://hdl.handle.net/10150/650832

THE SOCIAL LIFE OF TBI:

THE EMBODIED AND CONSTRUCTED MEANING OF MODERATE/SEVERE

TRAUMATIC BRAIN INJURY IN THE UNITED STATES

Austin W. Duncan

A Dissertation Submitted to the Faculty of the

SCHOOL OF ANTHROPOLOGY

In Partial Fulfillment of the Requirements

For the Degree of

DOCTOR OF PHILOSOPHY

In the Graduate College

THE UNIVERSITY OF ARIZONA

2020

THE UNIVERSITY OF ARIZONA GRADUATE COLLEGE

As members of the Dissertation Committee, we certify that we have read the dissertation prepared by: Austin W Duncan titled:

and recommend that it be accepted as fulfilling the dissertation requirement for the Degree of Doctor of Philosophy.

Eic D Ple ______Date: ______Dec Eic D Plemon

______Date: ______Dec 4 Monica Cae

Bia E Sileei ______Date: ______Dec 4 Bian E Silveein Susan Shaw ______Date: ______Dec 4 Suan Shaw

Final appoal and accepance of hi dieaion i coningen pon he candidae bmiion of the final copies of the dissertation to the Graduate College.

We hereby certify that we have read this dissertation prepared under our direction and recommend that it be accepted as fulfilling the dissertation requirement.

Eic D Ple ______Date: ______Dec Eic D Plemon School of Anhoolog

______Date: ______Dec 4 Monica Cae Gende and Women Sudie

2 Acknowledgements

No anthropologist ever completes an ethnographic monograph in pure isolation.

Granted, there have been several stretches during this odd period of social-distancing in response to the COVID-19 pandemic where I have not seen any other human being all day long. I just sat at home alone, feverishly working on my dissertation. But my committee, other advisors, family, and other non-romantic “significant others” were always a click or a call away for advice. I could not have completed this dissertation without their help. They have my undying gratitude and love, one and all.

I also have to thank the thirty survivors, their friends and families, and the many policymakers and NGO staff who shared their stories and bits of their work and personal lives with me during my year of participant-observation. The Social Life of TBI may be about an injury, but it is told through their stories. I do not think I will ever be able to adequately repay them for their openness and candor. But I have targeted this dissertation and any products that come from it to helping raise awareness and improve services for survivors and their significant others.

Finally, this dissertation was funded with a National Science Foundation Doctoral

Dissertation Research Improvement Grant in Cultural Anthropology, a Brain Injury

Alliance of Washington Survivor’s Higher Education Grant, and an Emil W. Haury

Dissertation Completion Fellowship from the School of Anthropology at the University of Arizona. Initial presentations of my findings were funded by the School of

Anthropology and the Sonoran University Center of Excellence in Disabilities at the

University of Arizona.

Dedication

This dissertation is dedicated to two groups of people. First I want to dedicate it my thousands of compatriot survivors in the city of Seattle and the millions more across the US, most of whom are unaware of the efforts of a small but significant band of individuals trying to make their lives better. I hope this dissertation and any products that come out of it will be able to help us all. Second, I dedicate this dissertation to those who have served as “significant others” in the seventeen-and-a-half years since I survived my own severe TBI. The second group includes most obviously my parents, as well as my brother, the Alias and De Vallejos, my dear friends and colleagues in the US and abroad, and the rehab teams who treated me in Egypt and Seattle. I could never have come this far without their assistance in my life “with TBI.”

Table of Contents

Abstract ...... 7

Chapter 1 – Introduction: From Injury to Impairment ...... 9 Introduction ...... 9 TBI as Injury ...... 12 TBI as Impairment ...... 18 TBI After Rehab ...... 24 Toward the Social Life of TBI ...... 27 The Multiple Meanings of the Social Life of TBI ...... 34 Conclusion ...... 39

Part 1: Individual Embodiments of TBI ...... 41

Chapter 2 – Living the Social Life of TBI: The Theory, Settings, and Methods of a Lightly Embodied Ethnography ...... 43 Introduction ...... 43 Blurring the Line Between Autoethnography and Ethnography ...... 45 Lightly Embodied Ethnography, Positionality, and the 3 Bodies ...... 51 The Social and Political Setting of a Lightly Embodied Ethnography ...... 54 Field-walks: Bridging Participant-Observation and Embodied Ethnography ...... 59 Preliminary Investigations ...... 63 Phase 1: Phenomenology, Narrativity, Particularity ...... 64 Phase 2: Performativity, Significant Others, Case Study ...... 68 Phase 3: Policy, Governmentality, Organizations ...... 72 Conclusion ...... 77

Chapter 3 – “If you’ve seen one TBI, you’ve seen one TBI:” TBI as Narrative Particularity ...... 78 Introduction ...... 78 Constructing TBI Narratives ...... 80 Tethering TBI ...... 86 The Particularity of TBI Narrative ...... 97 Beyond the Injured Body ...... 110 Conclusion ...... 116

Chapter 4 – “It Happens to the Whole Family:” Living “with TBI” as Complex Embodiment ...... 118 Introduction ...... 118 Embodying TBI ...... 120 Performing TBI ...... 133 The Disability of TBI ...... 144 Tetherball ...... 156 Conclusion ...... 161

Part 2: Social Constructions of TBI ...... 163

Chapter 5 – “It’s Like a ‘Wild West:’” Governing TBI Through a Policy of Precarity ..165 Introduction: The Stymied Initiative and the Policy of Precarity in Seattle ...... 165 Researching TBI’s Body Politic in a Rapidly Developing City ...... 171 The Precarious Life of TBI ...... 173 A “Wild West” of Federal and State Law, Policy, and Bodies ...... 179 Shifting Governance to NGOs and Blurring Definitions ...... 187 Survivors Struggle to Help Themselves ...... 196 Conclusion ...... 201

Chapter 6 – “And the Other Thing is…:” The TBI Community and Biosocial Identity .204 Introduction ...... 204 The State TBI Conference ...... 207 Arenas/Social Worlds Theory and the TBI Community ...... 211 TBI and the Brain Injury Community “From Above” ...... 217 Support Groups, Biosocial Identity, and Brain Injury as Community “From Below” .220 The Split ...... 232 Navigating Fluid Community ...... 240 Conclusion ...... 243

Chapter 7 – Conclusion: The Meaning of Multiplicity ...... 245 Introduction: What is the meaning of all this multiplicity? ...... 245 What to Make of It ...... 248 What to Do with It ...... 251 Building on and Expanding It ...... 254 TBI in Times of COVID-19 ...... 256 Conclusion ...... 259

Bibliography ...... 262

Abstract

TBI in this sense, the TBI that exists outside the clinic, is what it means to those it impacts at specific times and in specific interactions. TBI is not only embodied and constructed differently from person to person and time and place to time and place, but it is different. TBI is thus multiple.

I identify these social meanings of TBI ethnographically, drawing on over a year of interviews and participant-observation with survivors and those with whom they interact in one specific context, the rapidly developing and gentrifying city of Seattle,

WA. I find that TBI’s full meaning in the city, the multiple meaning that it holds as a distinct social object outside the esoteric worlds of biomedicine and rehab wards, is determined by the contexts in which it is invoked. The acronym is brought into being as a complex, shifting, and ultimately fungible concept that tacks back and forth between each individual, social, and political bodies with life-altering effects on survivors and those closest to them. Through this process, TBI is phenomenological and performative,

embodied and constructed, the product of narratives, relationships, policies, and social organizations.

In the final analysis, what I identify in the Social Life of TBI is an amorphous social object that takes on unique meanings in diverse social contexts. As those contexts shift and the acronym’s meaning multiplies, what is known as TBI comes to influence the embodied experiences of survivors and those closest to them in ways that expand far beyond head injury and its broad set of possible sequelae. These effects in turn further influence the acronym’s meaning, initiating a feedback loop that can exacerbate or ameliorate the problems many of my informants face in their daily lives. Through this entire process, a new TBI is born, one that is never not tethered to the original bodily injury that give it its name but is always also multiple, amorphous, inherently social, and politically inflected.

Chapter 1 Introduction: From Injury to Impairment

Introduction

A Traumatic Brain Injury (TBI) is a physical head injury that occurs in a single event. Over the last decade, the CDC has recorded well over 2 million TBI-related emergency department visits, hospitalizations, and deaths per year, making the injury one of the most prominent causes of death and disability in the country (CDC 2015, 2019). In this dissertation, I trace how one class of TBIs, those diagnosed as moderate-severe, inaugurate a host of bodily and social consequences for survivors of the injury, those closest to them, and their wider communities. These consequences muddy and multiply the acronym’s meaning, even as it remains tethered to its construction as the product of a singular event. TBI thus appears ambiguous and amorphous outside of biomedical contexts, used in distinct and even contrasting ways. This confusion inaugurates a feedback loop between survivors’ bodies and socialities that often leads to dramatic consequences such as poverty, social isolation, homelessness, and even suicide. These startling social comorbidities are widely noted in official statistics but widely unknown by the public.

I ground my analysis in two central theoretical principles. The first of these is ontological: in the chapters that follow I demonstrate how TBI is “multiple”, following medical anthropologist Annemarie Mol (1998, 2002). She traces how biomedical specialists spoke of, prescribed treatment for, and thusly enacted a seemingly

straightforward diagnosis, atherosclerosis of the leg, in two ways. Pathologists tested and diagnosed blockages in patients’ legs while practitioners learned of and suggested therapeutic treatments for patients’ pain and difficulty walking. Which version of the condition is enacted by whom and in which contexts determines the diagnosis, framing, and treatment of patients. Mol thus avoids epistemological questions of how these two sides understand the condition and which is the more accurate. She focuses instead on what each party in the enactment did and not what they knew or claimed to know. I argue that TBI is similar. For neurological pathologists who identify damage to survivors’ brains using specialized diagnostic equipment, the acronym stands for nothing more than the event of the head injury and its immediate biological effects. For the physiatrists, rehab therapists, and others who treat survivors, it covers the many sequelae and lasting impairments survivors exhibit during treatment. TBI as enacted is multiple.

The multiplicity does not stop there, however. My second core theoretical principle expands Mol’s analysis, following TBI outside of the hospitals, rehab wards, and biomedical domains where it is diagnosed and treated. I trace the acronym as it is enacted in the years after survivors return home, complete their rehab, and escape the watchful gaze of biomedical practitioners. In these quotidian settings, TBI takes on new meaning as a distinctly “social object” (Mead 1932). This TBI is created in and by means of social interactions that survivors have with others, most of whom have little to no understanding of what the acronym should or can mean. It also gets taken up by larger political and community actors, who may have little direct experience with or knowledge of it. I explore how TBI adds on new and sometimes conflicting meanings that depend on the context and participants involved in their generation.

My proposed object of analysis might seem to resemble what medical anthropologists have long studied as “illness”, the meanings of sickness and injury to patients and those with whom they interact (e.g., Kleinman 1981). I adopt but expand this analysis, following later medical and disability anthropologists who have increased the scope of illness to include social consequences beyond its original framing. Manderson

(2011) for example, approaches her subject—how individuals accommodate themselves to amputations, mastectomies, and other bodily “lacks”—without centering on biomedical interventions. She names this process “rehabituation,” the simultaneously life-altering and quotidian efforts of learning to live with mastectomies, amputations, and other bodily “lacks” that follow some biomedical intervention. Wahlberg (2018) further characterizes this process of getting by in a world that is not built for bodily impairment and difference as “morbid living.” He directs his gaze away from the heroic biomedical efforts to save and sustain human lives impacted by injury and illness, and focuses instead on the mundane actions through which these lives are conducted afterwards. Both of these scholars usefully identify how the process of living “with” bodily lack, change, or morbidity is something more than the conditions themselves. It cannot be neatly or succinctly deduced from the individual bodies; it is distinctly social and as such depends on human contexts and interactions. As I present in the following chapters, the multiple social object of TBI is the same, living “with TBI” is also a way of life that, while it may begin as injury, is not reducible to or derivative of head injury and its resulting impairments.

Moreover, TBI is never just a concern of individual survivors and those who support them. It is also societal and political, the subject of law and policy, support

groups and social organizations. To analyze these meanings, I draw on a more engaged and activist disability studies (DS) framework. DS traditionally identifies disability as the result of a dialectic between a bodily condition that is viewed as a flaw or impairment

(Patterson and Hughes 1999) and the discrimination, exclusion, or lack of accommodation for that impairment (Kasnitz and Shuttleworth 2001). In this framework, disability is not a static bodily condition or the result of individuals’ responses to those conditions. It comes into being when society constructs, treats, and enacts certain bodies as worthy of specific kinds of social treatment, both accommodations and exclusions.

Disability thus constructed serves to mitigate the effect of bodily conditions, rendering them passable or problematic, barring or permitting one’s access to social life.

Yet even this more nuanced position does not fully explain the disability of TBI, whose sequelae may or may not function as impairments for survivors and those around them. I therefore adapt more contemporary DS theory, one Siebers (2008) defines as

“complex embodiment.” Seen in this framework, the disability of TBI comes into being in the feedback loop created when survivors’ diverse impairments are not accommodated by society, which in turn affects survivor’s embodied experiences of their impairments, which further impacts the accommodations they both seek and are granted, and so on.

When complexly embodied, TBI can be constantly changing, produced in a complex web of social relations that exacerbates some survivors’ disabilities while improving others.

TBI as Injury

At base, TBI appears straightforward: a physical head injury that damages the brain inside the skull. As such, I must begin my analysis of TBI with the biomedical

constructions that resulted in its formal identification. Numerous biomedical textbooks, medical school courses, and even academic journals are devoted to the injury. The US

Centers for Disease Control (CDC) fleshes out but does not fundamentally alter the definition of the acronym: “A TBI is an injury that disrupts the normal function of the brain. It can be caused by a bump, blow, or jolt to the head or a penetrating head injury”

(CDC 2015: 2). It is thus a natural consequence of living in a world in which it is easy to hit—or be hit upon—one’s head. This definition is further enshrined in national law. The

US Traumatic Brain Injury Act of 1996 (P.L. 104-166)1 states unequivocally: “TBI is defined as brain damage from some externally inflicted trauma to the head that results in significant impairment to an individual’s physical, psychosocial, and/or cognitive functional abilities.” The Act, the result of a bipartisan political consensus in the middle of an election year, invokes TBI as a common and natural occurrence. The consensus of politics and biomedicine is simple and seemingly undeniable (from those perspectives):

TBI = head injury.

Accounts that clinicians now identify as TBI dot the history of medicine, as clinicians are quick to point out (Moore et al 2012). The acronym has been recognized in records of celebrated cases from ancient Egypt (High et al 2005) and Greece (Boake and

Diller 2005) to the birth of modern European and American medicine (Merleau-Ponty

2012, Roebuck-Spencer and Cernich 2014), including the celebrated case of Phineas

Gage (Van Horn et al 2012). It also features prominently in the US’s recent wars in the

1 The text of the law, along with the four amendments passed in the ensuing 24 years, can be readily accessed at https://www.congress.gov/congressional-report/104th-congress/house-report/652/1. A useful summary is available on the website for the Brain Injury Association of America, an organization discussed throughout this dissertation, at https://www.biausa.org/public-affairs/public-policy/traumatic-brain-injury- act.

Iraq and Afghanistan, where TBI became known as the wars’ “signature wound” (Tsao

2012). Every effort was made to extract head-injured soldiers from the battlefield where and when they sustained these injuries. If necessary, the soldiers were then medically evacuated to US military medical centers where they were treated and either returned to active duty or discharged to civilian society as disabled. Head injury is frequently cited as a key result of participation in contact sports, specifically American football. The celebrated 2015 film Concussion (Landesman 2015) stars Will Smith as Bennet Omalu, the Nigerian medical doctor who first publicized the issue in the US. In the movie,

National Football League players’ numerous repeated minor head injuries, concussions, result after several years in a deadly neuro-degenerative condition called Chronic

Traumatic Encephalopathy (CTE). TBI in this account is equated with the event of each single concussion, while CTE is the longer-term effect of multiple concussions. In these last two examples, TBI becomes implicated in larger exercises of nationalism that are tied up in war (e.g., Aciksoz 2012) and wildly popular professional sports. Within these historical and nationalist frames, TBI is equated with a physical injury and its diagnosis and care fall within the terrains of biomedicine and national governance.

Despite their public conception as events of extraordinary circumstances like wars and professional sports, physical head injuries are extremely common throughout the US, though their exact incidence is disputed. The official statistic only uses hospital data, however, and ignores any injuries that are not formally treated. Some have estimated that every year there are over 5 million head injuries in the US (Casper and Morrison 2012), while others estimate the number of head injuries in the US to be much greater (Faul et

al. 2010, Lorenz 2010). This is especially true in the case of milder concussions, where those who hit their heads may not ever know that their brains had been injured.2

The means of diagnosing head injuries as TBIs is not complicated and can easily be done outside of clinical contexts.3 This reinforces TBI as the product of an event as opposed to a longer lasting or chronic biomedical condition. The first and most foundational of the techniques of diagnosing a head injury as a TBI is simple loss of consciousness (LOC). “Severe” injuries are defined as those resulting in LOC of more than six hours, “moderate” injuries of 30 minutes to six hours, and mild of either no LOC or one less than 30 minutes. Another diagnostic tool is the Glasgow Coma Scale (GCS).

This is a numerical scale based on the sum of three sets of response categories ranked from 1 to 4, with 1 being no response, and 4 being an intelligible, purposeful, and rational response. The response categories are: movement of the eyes (ranked from 1 to 4), movement of the body (ranked from 1 to 6), and some kind of vocalization (ranked from

1 to 5), all in response to external stimuli. A GCS of 3 is the lowest possible score, indicating complete unresponsiveness, while a score of 15 implies no coma. Injuries resulting in a GCS of 6 or below are considered severe, 7-12 moderate, and 12-15 mild.

Length of Post-Traumatic Amnesia (PTA) is a third diagnostic tool that is commonly used, though it is less reliable than the first two and is usually employed in cases where the first two cannot be accurately or reliably assessed. It is measured by the length of time surrounding their injuries a survivor can remember. A PTA of greater than one day

2 Unlike NFL players who later die from CTE, the individuals that sustain them usually go on to fully recover, and the effects of these injuries is the source of significant debate in biomedical circles today. Medical anthropologist Anna Zogas (2018) has explored similarly “minor” injuries in depth among US military veterans, indicating an area for further research among the civilian population. 3 More in-depth description of these relatively simplistic diagnostic terms and categories can be found on most brain injury websites or medical textbooks that focus on TBI. For a simple and relatively easy-to-read overview, see Moore et al (2012).

is considered severe, a PTA of between one hour and one day, moderate, and anything less than one hour, mild.4

In this dissertation, I focus solely on moderate-severe head injuries, a category for which there is very little grey area. In most situations they are easily knowable and detectable without biomedical expertise. The vast majority of these injuries are closed and hence invisible but are immediately followed by a host of structural and functional changes in the brain that can have severe bodily impacts and are in many cases fatal. For many years neuroscience attempted to understand and theorize about what exactly happens following the event of a head injury, and it is this invisible process that makes up the etiology of TBI. Immediately after the head is impacted, the part of the skull that was impacted moves towards the brain it encloses. Normally, this does not cause damage, as the human skull is remarkably stiff, and the brain is not in immediate contact with the skull but is instead cushioned by a layer of cerebral fluid that protects it from sudden movement of the head. Yet with more severe impacts, the part of the skull that is most directly impacted pushes this fluid aside and directly strikes the brain. Often, the force of the skull on the brain causes it to bounces around inside the skull, striking the opposite skull wall in what is called a “counter blow” (CDC 2015). Together, the injury and counter injury cause widespread damage to the dense network of neural tissues and blood vessels that allow for the functioning of the human brain, causing immediate disruption to

4 These three scales of severity may not always line up neatly, and there may be debate as to which of the three broad ranges of severity a given injury falls into. Regardless, the distinction is largely an arbitrary classification and does not correspond to actual brain damage. It simply points to the supposed “severity” of the event of the injury itself and serves for the purposes of this dissertation to set the boundaries of easily identifiable TBI diagnoses.

several bodily functions and capacities that can often be fatal (Roebuck-Spencer and

Cernich 2014).5

However, many of these consequences are survivable with quick medical intervention. The most immediate and defining of these is loss of consciousness. For more moderate injuries, coma lasts for a few hours and survivors need limited supervision upon regaining consciousness. Those who sustain more severe injuries remain in a coma for extended periods. They are not able to independently eat or drink at all during this time. Many require medical attention to survive until they regain consciousness. Thanks to feeding tubes, intravenous fluid transfer, and other biomedical technologies, even these individuals are now able to survive for longer than was ever possible before in human history (CDC 2015).

The TBI referenced by these perspectives is thus concrete, solidly connected to the knowable event of a physical head injury. It happens in an instant and is tied to the specific impact of whatever object, force, or jolt, that caused the injury. This TBI can easily be tracked and measured and its impacts on society can be quantified and even monetized. Policies and preventative measures can then be developed and implemented that will mitigate its impact in predictable ways. Public policy and administration can then use its now well-developed toolkit to evaluate and modify these policies, ultimately minimizing any negative impact head injuries might cause for those who survive them

5 The most common form of moderate-severe head TBIs are Diffuse Axonal TBIs. In these injuries, the initial impact, counter impact, and ensuing rapid movements of the brain inside the skull break or otherwise disrupt the dense and intricate networks of cells and axons and thereby disrupt the brain’s biological function. Blood vessels and dense bundles of axons that connect the different parts of the brain are cut in a process known as “shearing,” effectively stopping parts of the brain from communicating or otherwise interacting with one another. The disruptions caused by the widespread shearing and damage to neural axons lead directly to dysfunctions in bodily systems and organs, resulting in possible catastrophic and deadly results (Moore et al 2012).

and for the societies in which they live. As such, both biomedicine and politics seem to agree on the simple understanding of TBI as a singular event.

TBI as Impairment

Yet the biomedical picture following the initial head injury is more complicated than this. After survivors regain full consciousness and any immediate threat to their lives has passed, the precise meanings of their injuries begins to change. Or rather, the meaning of the acronym describing their injuries does. It no longer refers only to the injury itself. Its meaning multiplies, encapsulating the injury’s lasting effects on survivors’ physical, cognitive, and emotional functioning alongside the injury itself.

These effects are known as “sequelae,” the exact number and extent of which differ from survivor to survivor (Moore et al 2012). Over the course of survivors ’ hospitalizations and programs of inpatient and outpatient rehabilitation, sequelae themselves can change, develop, and often completely resolve. Traditionally, this has only been held possible over the course of the first year after the injury, as some sequelae resolve naturally, and others remain even after survivors leave biomedical care. These more lasting sequelae become what biomedical scholars casually call “impairments,” indicating a chronic flaw or dysfunction in some physical or mental capacity. Together, these sequelae and impairments constitute the majority of both clinicians and laypeople, refer to as TBI: the physical and mental changes that survivors experience and continuously live with as a result of their head injuries.

The exact biological chain connecting the event of a head injury to TBI’s sequelae and the later impairments it inaugurates is still not fully understood, even by

neuroscientists. Because the vast majority of head injuries are closed, the only way the exact extent and location brain damage ever becomes visible is through diagnostic techniques of functional Magnetic Resonance Imaging (fMRI), computerized axial tomography (CAT) scans, Positron Emission Tomography (PET) scans, and the like

(Tuong et al 2012). These techniques are time consuming and expensive, requiring highly specialized equipment and skilled technicians to scan individual brains. The exact process by which they do so is not straightforward, and requires computer programs, operating technicians, and neuroscientific specialists to interpret and correctly identify the extent of the damage to cells, axons, and structures of survivors’ brains (e.g. Dumit 2004).

Additionally, though the general areas of the brain corresponding to functions—control of specific muscles, sensory capacity, emotional regulation, and the like—are well understood by neuroscience, the exact correspondence between specific tissue damage and these functions is not.6 In other words, the etiological chain linking traumatic head injury to its impact on the rest of the body is murky. For all the cost, work, and expertise put into it, these diagnostic techniques cannot give the exact state of the survivor’s body once they emerge from coma.7

In practice, sequelae and impairments must manifest in survivors’ behavior and functioning in order to be known and diagnosed as such by clinicians. Physiatrists, the biomedical doctors who oversee the treatment of moderate-severe TBI survivors once the immediate danger to their lives has past and they again may have some chance of

6 Though there is clearly a great deal of work to be done to better understand the work done by MRI technicians, neuroscientists, and other biomedical clinicians to characterize this etiology (cf. Dumit 2004). 7 Numerous public health studies cite enormous annual costs associated with these injuries. See for example Moore et al (2012) and Roebuck-Spencer and Cernich (2014). These sums are calculated in terms of hospital fees and wage hours lost for a total number of TBIs that is far lower than current estimates, however. The numbers of what all of my informants spoke of as “costs” associated with TBI are surely far greater.

regaining consciousness and independent bodily functioning, are primarily responsible for this. They do not rely solely or significantly on brain scans and other neurodiagnostic tools to measure the effect of the brain damage caused by a head injury. Instead they use an iterative series of direct observations and patient assessments to prescribe, monitor, and develop treatment regimens in response to their patient’s sequelae. Treatments may include pharmaceutical and traditional biomedical interventions alongside a wide range of physical, cognitive, and other therapies that are outside of physiatrists’ expertise. In this sense not even the doctors who treat survivors have a singular approach but rather determine and alter their treatments in response to survivors’ individual sequelae.

Physiatrists do not treat survivors alone. They oversee a team of rehabilitative specialists, each of whom works with survivors on the specific areas of essential bodily capacity that the survivor would need to function in contemporary social and physical environments.8 The standard rehab team comprises attending nurses, neuroscientists, rehabilitation therapists from physical therapy (PT), speech pathology (speech), and occupational therapy (OT), rehabilitation psychologists, and social workers. Teams may occasionally include more novel specialists in art therapy, recreation therapy, or specialists from other disciplines who treat survivors’ comorbid injuries including broken bones, problems of the ear, nose, and throat, ophthalmologists, and many others. Both through observation and through a regimen of therapeutic assessments, the members of the rehab team further identify the treatments and therapeutic regimens to conduct with

8 Owing to the ways that all of my informants speak of rehabilitation, I will in this dissertation primarily refer to it as “rehab.” This is not to be confused with the more common association of the shorthand of the term with treatment programs for drug and alcohol addiction, which does not involve the work of physical rehabilitation therapists, speech pathologists, or occupational therapists and is instead practiced primarily by social workers and counselors.

their patients. The entire team will meet with the physiatrist regularly to discuss, assess, and alter treatment for what they speak of as their patients’ “TBIs.” From their perspective, the acronym does not refer to the injury itself but to its sequelae.

This multiplicity of biomedical practitioners and treatments hints at what may be the largest difference between the biomedical construction of TBI and other bodily injuries: there is no singular bodily symptom or outcome (outside the initial coma) belonging to the acronym. Simply, what the acronym portends for the bodies that are injured and the brains that have been damaged varies from case to case. Anything that the brain affects could be altered by TBI, potentially including mental and cognitive changes alongside physical and sensory functioning. For some, cognitive and emotional issues constitute the bulk of their injuries’ sequelae. Yet many other survivors’ sequelae are primarily physical. Most have some combination of the two, and all of these are complicated and intersected by identity and other personal factors that they possessed before becoming injured. Thus unlike any other impairment group, a given TBI can but does not necessarily result in any specific condition or sequelae, save the initial coma.

Most obviously, survivors frequently struggle with ambulatory, sensory, and other clear changes in their physical functioning. These physical sequelae are compared to survivors’ physical functioning before they sustained their head injuries and named as

“deficits” (Moore et al 2012). Other deficits are cognitive or emotional. The most common of them are memory difficulties, from problems with processing or “working” memory to long-term memory storage and retrieval (Sanders and Veldhoven 2014). Like other neurological conditions, the ways that the cognitive sequelae of TBI appear in survivors lives can be hugely diverse and can affect survivors’ abilities to complete

quotidian tasks of being a “person.” These include but are not limited to: learning and remembering names, washing and dressing appropriately, and maintaining attention to what others tell them.9 Some survivors exhibit emotional sequelae during their rehab, as well. These conditions are held to be the result of physical brain damage and thus akin to the neurological conditions mentioned above, they may be treated by psychiatrists and rehab psychologists (Rogers and Read 2007). The most common of these sequela is depression, while anxiety disorders, psychosis, apathy with and without depression, behavior "dyscontrol", and other conditions have been identified in a significant number of cases (Rao and Lyketsos 2000). There are psychopharmacological treatments for many psychological sequelae but owing to complications of physical and structural damage within survivors’ brains, these may not have the same effects on all survivors. Any psychological treatments survivors receive in rehabilitation thus depends on the specific symptoms survivors exhibit during rehab.

The rehab team does not attempt to cure or otherwise remove sequelae, but to coach survivors to counteract them if they do not resolve on their own. In most medical centers that treat survivors, rehab departments are full of machines and technologies that help survivors relearn how to ambulate, speak, and pursue mundane tasks like creating a schedule, reading a menu, fixing a light meal, at other activities of daily life. Meanwhile physiatrists monitor individual survivors’ bodily conditions and health statuses, meeting with the rehab team regularly to discuss survivors’ conditions and sequelae. Under their leadership, team members propose changes in therapy regimens but the final decision

9 In these ways, TBI is akin to memory-related conditions that are beginning to be assessed from anthropological angles such as autism (Ortega 2009), Alzheimer’s (Taylor 2008) and dementia (Robbins 2019, Moser 2011).

rests with the physiatrist. They also decide when to release survivors from the hospital and what supports they and their caregivers or family members should have.

When survivors share sequelae and impairments, they rarely experience them at the same level of severity. One survivor, with a mild amount of ataxia, may only have minor problems in walking and speaking while another with more severe ataxia may be unable to walk without falling or intelligibly utter words. Moreover, as they begin to recover from their injuries, survivors’ sequelae begin to resolve. Changes occur much more rapidly in the initial days and weeks following survivors’ injuries as they regain consciousness and any other vital bodily processes that allow them to survive outside of the hospital setting. Changes may then slow but may not fully cease for the remainder of survivors’ lives, leading to what Krefting (1987) calls a “lifelong recovery.” Secondary psychological consequences can also arise during this period, as survivors may have difficulties adjusting to their impairments and develop new depression, anxiety, and other mood disorders (Rao and Lyketsos 2000, Rogers and Read 2007). Adding this constantly shifting nature of TBI to the breadth and indeterminacy of the injury’s sequelae, it is far more complicated than its initial construction as an injury would imply.

Thus, by the time most moderate-severe head injury survivors are released from inpatient rehab wards, TBI has already added to its meaning. The acronym no longer indexes only the initial injury, tied to a single and identifiable event. It has also become entangled with survivors’ various impairments. These impairments themselves are not stable, resolving and vanishing or appearing and worsening throughout their ensuing lives

(Roebuck-Spencer and Cernich 2014, Wendell 2017). TBI can thus mean physical head injuries diagnosed by such simple measures as LOC, GCS, and PTA at one stage in a

survivor’s medical career (High et al 2005), at the same time as it can also mean a variable set of sequelae and impairments in another. Those meanings always remain tethered to the original event of a head injury, sometimes loosely and sometimes strongly.

Just as with atherosclerosis as analyzed by Mol (1998, 2002), TBI is multiple, capable of holding more than one meaning that depends on the context in which it is invoked.

In the United States, full rehab treatment for moderate-severe TBIs, the treatment that officially identifies the injury and its sequelae and helps survivors begin to adapt to their lasting impairments, is usually only granted with insurance plans. Ethically, hospital emergency departments must provide care to all survivors who are unconscious, but they are not required to provide all survivors with a full rehabilitative regimen. Those without insurance or without the financial backing to cover inpatient and outpatient rehab are then released back into the world without further biomedical support. There are undoubtedly many instances where this occurs, but these cases fall through the cracks in the official networks established at governmental levels to track survivors. As such, even though they present only a small portion of those I included in my research, they present the first instances of what I now turn to in this dissertation, TBI as it exists and is experienced outside biomedical care.

TBI After Rehab

Following their inpatient medical treatments, TBI survivors are released back into the world to begin a stage that many of them and their clinicians refer to as “at-home recovery” (Lorenz 2010). During this time, most of those who have healthcare coverage continue outpatient rehab regimens until their remaining sequelae resolve or they develop

strategies to accommodate themselves to their lasting impairments. Some may live in sub-acute facilities such as nursing homes, some return home to be taken care of by families as they complete outpatient rehabilitation and return to work, some return to work directly, and some live on public assistance and move into public housing. These are not mutually exclusive categories, and survivors move among them throughout periods they and their medical providers term their “recoveries.” Many survivors remain under the watchful eye of biomedicine at this time, enrolling in various community treatment studies and programs.

I know the importance of this stage personally. In 2003 I survived my own severe

TBI from a traffic accident. Still being on my father’s medical insurance at the time, I was able to receive intensive care and inpatient rehab in Seattle. I was discharged three months after my injury to begin my own recovery, living with my parents and continuing outpatient rehab. But after eight months, I outgrew my father’s insurance coverage and was no longer allowed to continue formal rehab. I also chafed at being 23, unable to walk or drive myself independently, and plagued by a host of impairments, developing secondary psychological problems and a related sleep disorder that continue to trouble me to this day. At the time, I enrolled in two medical studies that gave me limited further access to biomedical treatment, but otherwise had stopped all rehab care until years later.

I could tell that there was far more going on in my own life and injury than my physiatrists and rehab therapists had treated me for.

At this point, my own TBI was similar to other chronic bodily conditions that are not treated as acute and life-threatening bodily emergencies. As my rehab ended, I become detached from the biomedical apparatus that helped me survive my injury, and

began to reenter the life and activities left behind when I entered my coma. Manderson

(2011), writing about her own physical rehabilitation for a hand injury, compares it to amputations, mastectomies, transplants, and other similar cases of individuals “living with a lack.” Like her and her informants, I worked through biomedical rehabilitative techniques to “rehabituate” or re-accommodate myself to changed—and in many cases continuously changing—bodily and cognitive processes and capacities. This included learning new ways to conduct myself and taking up, devising new ways to pursue, or completely eschewing the hobbies and activities of daily life I had pursued before my injury. Some clinical studies, often from nursing (e.g., Lorenz 2010) or psychology (e.g.,

Rogers and Read 2007), may identify sources of distress that plague survivors after formal rehab ends, but rehabilitative disciplines have only recently taken interest in this period. I was never made aware of its importance during my own recovery.

As I later discovered, I was not alone in my post-rehab struggles. Many survivors have significant problems in their lives after they complete rehab and leave biomedicine’s watchful and protective sphere. Public health scholars have raised numerous troubling statistics that hardly seem to relate to the original medical-political consensus TBI as injury or impairment. For example, a large percentage of homeless individuals in numerous cities have been found to be TBI survivors (Lafferty 2010, Oddy et al 2012,

Gainer 2018). Many survivors go through divorces after their injuries, become disconnected from their families and pre-injury friends and acquaintances, and live in social isolation (Lorenz 2010, McKintyre and Kendall 2013). Something happens to many survivors after rehabilitation, something social that is not accounted for by the biopolitical consensus of TBI as either injury or impairment. Some end up leading what

Berlant (2007) names a “slow death,” drifting away from or being pushed out of their former social lives and networks and dying in isolation from entirely preventable causes.

Yet many more did not, as I knew from the many survivors I had met personally during my 17 years as a survivor. How could such a seemingly straightforward injury lead to such hugely diverse outcomes for those that survived it?

Toward the Social Life of TBI

From the perspective of survivors’ social lives outside of biomedical care, the acronym is clearly not as straightforward as its initial construction as the result of a single event would suggest. What then are we to make of it? The question would seem relevant to many anthropologists, given their concern with the role that the human body, brain, and even disability plays in contemporary societies and cultures. Yet despite appearing on the margins of numerous key studies in medical anthropology (Kleinman 1988,

Mattingly 1994) and the anthropology of science (Moser 2009, Dumit 2004), TBI and

TBI survivors have not been studied or analyzed as anything other than data for other studies.

As a survivor of a severe head injury and new graduate student studying medical and cultural anthropology, I found the lack of social scientific analysis of the injury especially strange. Thus, like Martin (2008) and Manderson (2011), I used my own experience as motivation for ethnographic investigation.10 At first, my own experience

10 As indicated, several prominent anthropologists adopt a similar approach, using their own lives, experiences, and identities as inspiration and ground for their investigations but not using themselves as a central source of ethnographic data. Though this more personally-relevant—hence personal—scholarship has often been castigated as “postmodern” as occurred in the Sahlins (1995) and Obyesekere (1992) dispute of the mid-1990s, or “auto-ethnography” (Van Maanen 1988), a great many well respected and insightful ethnographies including Martin (2008), Manderson (2011), and others have come from these more-though-

seemed to resonate most closely with a phenomenological approach first outlined by

Edmund Husserl early in the last century.11 The branch of philosophical inquiry he began started in the analysis of human consciousness and conscious experience. It thus seemed a logical starting point for understanding what by definition includes the loss and recovery of consciousness. Indeed, my injury had changed not only my bodily functions but how I experienced the world. Moreover, my various impairments affected how I interacted with that world—and most importantly how I interacted with others.

Phenomenology, despite the claims of its detractors that it is a purely individualist framework (Desjarlais and Throop 2011), is both individual and social. Heidegger (1953

[1927]), Husserl (1960 [1931]), and other early phenomenologists pointed out that human—hence phenomenological—experience is only ever possible in a world “always already” populated by others. Others inform and, in part, make up every individual’s bodily existence. Merleau-Ponty (2012) took this a step further, arguing that the very act of perceiving implies a kind of co-constitution, where the body is made aware of itself through the process of perceiving other objects, including other people. Merleau-Ponty attempted to collapse the distinction between perceiving subject and perceived object or other by considering the act of perception as a kind of embodiment (Csordas 1994). For phenomenology, embodiment and embodied experience are both individual and plural, physical and social.

not-fully embodied methods. I discuss this methodology, what I call “lightly embodied ethnography” more in depth in the next chapter. 11 Husserl (1960 [1931]) gives a good synopsis of phenomenology’s original concepts and arguments. Heidegger (1953 [1927]) was in regular conversation with Husserl at the time, and though his work begins in the principles of ontology, it expands and usefully develops phenomenological principles.

Drawing on these earlier phenomenological theories along with earlier anthropological studies of the culturally-defined body (e.g., Mauss 1973 [1935]) and

Bourdieu’s (1980b [1977]) sociological theory of practice, Csordas (1990) developed a specifically phenomenological anthropology, a study of what he called “cultural embodiment.” Through this process, the individual perceiving and acting body is itself imbricated with and penetrated by cultural symbolism such that cultural practices as charismatic healing can be effective, an empirical possibility long denied by biomedical science (1994). TBI, I reasoned by analyzing my own experience through these theoretical lenses, must function similarly. From my embodied and phenomenological perspective, the world did not just seem different, it was different. Moreover, this changed world was both, the one that I perceived and one that was inhabited and constituted by others who were independent of my perception. My experience in the years following my own injury was constituted by both my own changed perceptions of the world and my changed interactions and experiences with those who inhabited it with me.

In addition to phenomenology, more contemporary scholarship of social performance and performativity helped me better understand survivors’ stories, especially when they were nothing like my own. Other survivors, owing to impairments that are mostly invisible and are consequently misunderstood (Lorenz 2010), complained of difficulty performing certain social roles they were expected to fill, such as family member, friend, or employee. Without assistance or accommodation, they frequently made mistakes, taking on the kind of “spoiled identity” that Goffman (1963) influentially names stigma. In cases when others knew of survivors’ injuries and their resulting

invisible impairments beforehand, their expectations became a sort of straitjacket, constricting what survivors were expected or allowed to do or say. Others would press my survivor-informants into roles and positions they may not want or that may not be appropriate for them, similar to the normative processes Butler (1993) described around sex and gender. For her, both sex and gender are socially constructed as rigid ideals of what male and female bodies are and should do, ideals they cannot help but fail to always fulfill. From the moment that a newborn is held up and proclaimed to be either a “boy” or a “girl,” that person’s future actions—or performances—are thus pre-determined as a kind of always-receding horizon. In this sense, the “performativity” of TBI can be seen in the ways that survivors’ possible actions, from the moment they are understood to be survivors, are presupposed by others. They can be coddled, treated as if their various impairments mean that they are less intelligent or insightful than they are, and not given the respect and understanding that they seek. In the much more likely cases where others do not know of survivors’ TBIs, they treat survivors as if they have no impairments.

Survivors thus may not get any needed accommodations, placing them in a kind of double-bind (Krefting 1990, Snyder and Mitchell 2006). It would thus be nearly impossible for them to be treated in such a way that both accommodates and respects their status as survivors.

Thus, after years of informal preliminary research and investigations with survivors, their friends and family members, and governmental and NGO officials that worked with them, I could not exclusively adopt either a phenomenological or a performative approach to the injury. Instead, following Geertz (1983), Casper (1994), and others, I now regard my subject matter from a more pragmatic position. TBI in this sense,

the TBI that is constructed and conceived as such outside the clinic, is what it means to those it impacts at specific times and in specific interactions. As such, TBI can have many different interpretations, and not all of these are compatible with each other. To better understand the commonalities among these diverse interpretations, I investigate the meaning of TBI as a social object. George Herbert Mead defined this early in the last century as objects that are created in social interactions (1932). They are akin to

Durkheim’s “social facts” (1938), socially constructed objects that have no meaning outside of human sociality. The social object of TBI ultimately serves as a kind of boundary object (Star and Griessner 1989), distinguishing survivor from survivor, case from case, and story from story, at the same time as it holds them together by what they share: TBI. The social object of TBI, within this framework, becomes an ambiguous, shifting, and multiple concept that my informants talk about, live with, craft policies for, and help each other with.

This diversity of social meanings of the acronym, as it is taken up, changed, and used in diverse context and circumstances, is one that I call The Social Life of TBI. In this dissertation, I will flesh out this concept, tracing four of its specific meanings: narrative, disability, policy, and community. The genesis of this methodology lies in my own life and experience as a survivor, but its content comes from my interviews and participant-observation with survivors and those with whom they interact through both the theory and practice of multiple disciplines. When understood as multiple in this sense,

TBI is not only embodied and constructed differently from person to person and time and place to time and place, but it is different. These diverse meanings are all held—or

“tethered,” as presented in Chapter 3 and referenced throughout the chapters that

follow—together by their connection to and derivation from the original head injury.

Their specific use, as for Mol’s pathologists and clinicians and my neurologists and physiatrists, depends on who is invoking them and in why. TBI’s different meanings thus can serve different and even conflicting purposes. The multiplicity that TBI holds outside the esoteric worlds of biomedicine and rehab wards, is determined by the context in which the acronym is invoked.

In the case of one survivor who I call Olivia, the acronym at one moment stands for her personal story, framing and giving context to the accommodations she requests from her community college faculty. At other times, it can be the basis of her frequent arguments with her husband, as they argue over its specific meaning in and effect on their lives together. In a third moment, Olivia’s TBI serves as the reason for the restriction on her professional license that keeps her from working, regardless of her actual capacity to complete the work. And in yet others it becomes the basis for identity that she hesitantly shares with survivors of head injuries, strokes, brain cancers, and other forms of brain injuries in local support groups. TBI in Olivia’s case is a complex, shifting, and ultimately fungible concept that depends on specific contexts and social interactions for its meaning. It is thus phenomenological and performative, embodied and constructed, the product of narratives, relationships, policies, and social organizations.

Biomedical research has led to remarkably effective treatments of TBI-related injuries, allowing patients to survive injuries that would have killed them only a few decades before, and refining the practice of rehabilitating survivors’ individual physical and cognitive capacities such that they can lead lives that approximate the lives they were

leading or sought to lead before their injuries.12 In arguing that TBI is multiple, I do not mean to imply that these constructions are wrong. Instead, I contend that they are not the whole picture and cannot stand for what TBI means to those whose lives it touches. The many survivors, significant others, and policymakers who each act upon and thereby bring into existence slightly different conceptions of the acronym rarely acknowledge this multiplicity. It inspires a confusion in social programs and policies, which intersect and often contradict each other, facilitating the drastic co-incidences of TBI and social problems such as homelessness. The adherence to the strict medical-political consensus from policymakers and service providers at best limits any lasting impact their laws, policies, and social interventions can make and at worst can harm the lives of those they seek to help.

In the final analysis, what I identify in The Social Life of TBI is an amorphous social object that is created across diverse social contexts. As those contexts shift and the acronym’s meaning multiplies, “TBI” comes to have effects on the embodied experiences of survivors and those closest to them that expand far beyond head injury and its broad set of possible sequelae. These in turn come to affect survivors, initiating a feedback loop that can exacerbate or ameliorate the problems they may face in their daily lives. A new type of disability, one that I will show in the following chapters is narratively particular

12 There is a broad literature addressing these facets of TBI, as suggested in the first sections of this introductory chapter. Not only is this readily accessible to clinicians and academics through newsletters like those published by Seattle’s own University of Washington TBI Model System, journals like Brain Injury, Head Trauma Rehabilitation, and journals for the various rehabilitative disciplines, and numerous textbooks (see for example Sherer et al 2014 and High et al 2005), but there are numerous professional associations of neuroscientists, clinicians, rehab therapists, and other specialists who address these concerns. There is work to be done in unpacking the various black boxes upon which these disciplines depend, yet as noted above, this matter is of little direct importance to the survivors I included in my research and in deference to their wishes (and because adding such an analysis would far exceed the bounds of my original research questions), I am leaving this study for a future project.

and complexly embodied, the subject of a policy of precarity and amorphous community identity, thus comes into being. Together, all of these new meanings work to facilitate, harm, and ameliorate the social lives of TBI survivors and those closest to them.

The Multiple Meanings of the Social Life of TBI

Undoubtedly, there are more meanings of TBI than those I highlight in the chapters that follow. Moreover, the two broad sections into which I group those meanings are themselves fungible, with porous boundaries that interpenetrate and overlap. In the first section I draw on the social lives and relations of individual survivors, as well as their interactions with each other, family and close friends with whom they interact on a daily basis, and the clinicians, social workers, and NGO staff who work with them.

Through this discussion, I highlight certain elements of my subject that may prove valuable to those most directly impacted by TBI. In the second section, I explore how new meanings of TBI are produced on a larger and more systemic basis, through the work of policymakers, civil society and community leaders, state conferences and support groups. These various actors blur the boundaries between survivors of TBI and other neurological insults, fomenting an amorphous definition of the acronym as a part of a larger and even more diverse category: “brain injury.” Through this entire process, a new TBI is born, one that is never not tethered to the original bodily injury that give it its name but is always also multiple, amorphous, inherently social, and politically inflected.

The first section of this dissertation assesses the social object of TBI from the perspective of those who live “with” it most intimately: survivors and those closest to them. In it, “The Social Life of TBI” describes the lives that are tied up in and become

indistinguishable from the acronym. New meanings to the acronym are born in the social interactions that take place in these lives, complicating and multiplying its formation outside the tightly controlled and sterilized walls of biomedical spaces.

Chapter 2 begins with the story of my own injury, using it and its continued impact on my life to identify the specific subject and research questions that guided my fieldwork. I discuss how I used my own experience in concert with multiple theoretical perspectives in anthropology and social science to develop a data collection plan. That plan, which I call “lightly embodied research,” presents a new version of the “embodied research” (Turner 2000) that both embraces and then moves beyond my own experience.

I discuss the three distinct and overlapping phases of my fieldwork, roughly adapted from

Scheper-Hughes and Lock’s (1987) famous “prolegomenon” for medical anthropology.

The subsequent three chapters each follow one of the three “bodies” Scheper-Hughes and

Lock propose, individual, social, and political, identifying a new meaning attributed to

TBI that corresponds to each of them.

Chapter 3 examines other survivors’ stories of their injuries and lives. These take the forms of narratives, most often cursory or “little narratives” (Mattingly 1998) of their own injuries and resulting impairments, that inadvertently fill out the acronym with meanings specific to their own particular lives and experiences. I propose the concept of

“narrative particularity” to describe the way in which the acronym is always narratively

“tethered” to the events of survivors’ head injuries, but is never reducible to them, to the impairments that follow them, or to other details of survivors’ lives that give meaning to what they speak of as “my TBI.” In keeping with social scientific understandings of biomedical identities, survivors’ narratives are not constructed in isolation from one

other.13 Survivors learn how to tell their stories from diverse sources, including in rehab treatment, other survivors they meet, and the organizations and support groups they work with. Once tethered, TBI narratives can be loaded with unique and particular meanings.

Afterwards they are free to detach from the tether and relate elements of survivors lives that may have little to no direct connection to their head injuries. This process, which is a key way in which non-survivors learn about TBI, is rarely perfect, however. Tethers can and do stretch, fray, and break before they are able to take their own particular journeys.

When this happens, the narratives may not reach their desired destination; listeners do not hear the message that survivors or others were trying to convey about their TBIs, and survivors’ requests for understanding or accommodation can fail. The tethering process undergirds all of the analyses that follow. Although I do not mention it as prominently in later chapters, it should always be understood as a key element of TBI’s diverse constructions.

Of course, narrative is not the only way that those around survivors gain knowledge of TBI. They also come to perceive and experience it through quotidian interactions and close personal relations with survivors. Chapter 4 details how survivors’

“significant others” (SOs)—family members, romantic partners, roommates, and others upon whom survivors depend and with whom they regularly interact—come to know TBI much more intimately. They do not just hear about TBI; they live “with” it and thereby help construct it. I first explain the acronym in phenomenological terms, as a unique form

13 See for example Carr’s (2016) discussion of social work programs and support groups for drug and alcohol addiction. In these organizational contexts, individuals learn how to assume institutional identities through narrative and other speech acts. Dunn (2014) similarly traces the ways that individuals in Japan develop their own identities and learn bolster their oral arguments through the adoption of specific narrative structures and genres.

of being in the world (e.g., Heidegger 1953 [1927]) for both survivors and those around them. At the same time, the acronym is constructed performatively (e.g., Butler 1993), as something survivors and their SOs do. These two positions are often at odds, however, and I use theoretical models borrowed from Disability Studies (e.g., Siebers 2008) to stitch the two together. When viewed through this lens, TBI emerges as a specific disability and not just a set of individual impairments, one that can be both phenomenological and performative at the same time. Whole families affect and come to be affected by the disability of TBI, justifying a common refrain throughout much of the literature, “TBI happens to families.” In these social situations, TBI does not need to be narratively tethered to survivors’ stories. Because of their frequent contact with survivors, significant others come to experience what TBI means in a much more intimate fashion than narrative can provide. TBI must then be tethered to action and interaction, in a more combative and interactive process I refer to as “tetherball.” Matches of tetherball can be won, lost, or go on indefinitely, and thereby set the boundaries for what living “with TBI” means for survivors and their significant others.

The second section approaches TBI from a broader perspective, where we can see a different TBI that is fleshed out in social organizations, spaces, and gatherings. This

TBI is much more loosely tethered to the injury that originally gives the acronym its base meaning. Its boundaries are often blurred with those of other brain injuries, which works for some survivors but fails others, who can fall through the cracks of the social and community safety nets set up to catch them with devastating consequences.

Chapter 5 explores what I call TBI’s “body politic,” following the anthropology of policy to identify it in national and state law, government offices, local NGOs, and

community organizations (Bear and Mathur 2015) as they attempt to deal with startling co-incidences of TBI and social problems such as poverty and homelessness (Gainer

2018, Lafferty 2010, Oddy et al 2012). Each part of this amorphous body infuses the acronym with different and sometimes contradictory meanings that are built on particular stories or lives and thereby tethered to the injury. Some of them maintain a firm tether to the medical-political foundation while others further blur its meaning, with grounding in particular survivors’ stories or lives “with TBI.” Because TBI means different things for each survivor, policies and programs devised in this way may not have any relevance to or benefit for all survivors. The result of this murky and contentious situation is a set of confusing and largely toothless public policies for TBI that work well for some survivors and not others, leaving many in a position that anthropologists and others have named

“precarity” (Das and Randeria 2015, Thorkelson 2016, Butler 2009, Lorey 2015). Those in this situation live in liminal and precarious states, held close to the edge of calamity by policies that both aid and harm them and assure that they will be unable to band together to improve their collective situations. In applying this concept to TBI, I trace how policies and policymakers facilitate those problems by failing to help most survivors in precarious circumstance and creating the disorganized social milieu in which survivors can and often do slip through the holes in social safety nets set up to catch them.

Chapter 6 presents one of the most commonly espoused solutions to many social problems: “community” (Miranda 2002). What many of my policy-informants referred to constantly as the “TBI Community” is itself a multiple and ambiguous entity. It is often subsumed within the larger brain injury community that is promoted and organized by

TBI’s body politic. The boundaries of these social organizations are themselves indistinct

and shifting, bearing more in common with sociological concepts of arenas and social worlds (Strauss 1978) than they do with the more traditional place-based meaning of the term. This imposed sense of community is often a poor fit with survivors’ particular circumstances and senses of personal identity. In response, a small group of survivors formed their own version of community based around a collection of biosocial support groups. These groups, like the top-down version of community imposed by policymakers, are themselves ambiguous and constantly changing. They are all tethered together through their connection to physical brain injury. The two sides to of the brain injury community come into conflict, reverberating among the community they bring together.

As a result, survivors and their significant others are left to navigate within this turbulent social environment and the “Wild West” of the body politic of TBI on their own.

Through these chapters, the dissertation’s second part traces how these purely social meanings of TBI interact with the constructions of TBI as individual story and complexly embodied disability noted earlier. Their tether to the original injury is much less solid and their effects for survivors and their significant others are much more tenuous. I thereby identify social and political entanglements of the acronym with wider social and political processes that have little to do with head injury but much to do with

TBI.

Conclusion

In the final analysis, this dissertation is not only about TBI survivors, nor is it only about head injury, its consequences, or the people it affects. It is about how one seemingly simple and singular physical injury can become more complex than its original

biomedical definition and imbued with multiple conflicting meanings. The confusion created by this multiplicity facilitates the dire social cooccurrences noted by public health and biomedical statistics. “TBI” is thus not reducible to the injury or the broad range of shifting impairments that it can cause, even though it is never not them, either. It is instead always also a complex and multiple social object, whose meanings are overlapping and whose boundaries are indistinct. Each additional meaning is tethered to the original injury and its base medical-political construction but only comes into being outside of biomedicine’s hegemonic influence. Thus the social object of TBI can have much greater impact on the lives of survivors, those closest to them, and the communities in which they live than the TBI that begins in a single event and the move from injury to impairment.

Part 1: Individual Embodiments of TBI

If TBI begins as a physical head injury, it has already shifted and added to its meaning before survivors leave the hospital or clinic. By the time survivors are discharged, their injury has also become a cluster of impairments that are differently embodied by each survivor. The following year is what most of the 30 survivors I interviewed (hereafter “survivor-informants”), termed their “recoveries.” In some cases, this period can last for years—even the rest of survivors’ lives. In others, it lasts for less than a year. Physiatrists and the rehab team maintain a watchful eye on those of my survivor-informants they continued to treat in outpatient care, while the uninsured and my survivor-informants who could not afford rehab were left to “recover” on their own, such as they were able.

What I am calling the Social Life of TBI begins here, when TBI escapes biomedical control and becomes the concern only of individual survivors and those closest to them. Since their post-TBI impairments affect how survivors experience and live in the world, TBI becomes something that survivors embody and something that appears in their social lives when survivors attempt to explain their actions or reactions with recourse to their injuries. Their interactions with others—especially those I call significant others—in turn colors survivors’ experiences of what they call their TBIs, creating a feedback loop between impairment, interaction, and experience. Moreover, as survivors’ significant others can in turn become wrapped up in survivors’ lives and even come to the embody their own effects of TBI. The social object that TBI becomes, the

one that is constructed in these interactions, is thus something that multiple individuals come to live with.

The three chapters that follow trace this process in how individual survivors and those closest to the survivor experience and perform TBI in their daily lives. The first begins by exploring my own embodied and social experience in the genesis of this dissertation. The next chapter moves on to my survivor-informants’ narratives of their own experiences. These narratives add a new meaning to the acronym, one that is tethered to the biomedical acronym but comprises the numerous particular details of individual survivors’ own lives. These stories were until recently the primary source of public knowledge about head injuries, survivors’ diverse and particular impairments, and

TBI in general. In the third chapter, I adopt a Disability Studies lens to focus on how and why TBI becomes disabling through survivors’ interactions with their significant others.

My survivor-informants’ significant others exacerbate or ameliorate the difficulties of their lives “with TBI.” I show how these others can also be said to live “with TBI”, not only because they live with survivors but because they come to embody and perform

TBI. Significant others’ performances and embodiments of TBI in turn have very real consequences in their lives. Several of those I interviewed changed employment, relationships, residences, and numerous other elements in the course of their lives “with

TBI.” Through all three chapters, I portray the meanings of TBI that emerge in my informants’ social lives and interactions as distinct from but still linked to the acronym’s original meanings as both injury and impairment.

Chapter 2 Living the Social Life of TBI: The Theory, Settings, and Methods of a Lightly Embodied Ethnography

Introduction

In deference to contemporary developments in social science that highlight the centrality of the ethnographer to ethnography, I start this chapter on the theory, settings and methodology of what I call “lightly embodied ethnography,” with my own story and how it influenced the genus, proposal, data collection, and analysis that resulted in the present dissertation. 14 In my role as anthropologist and instrument of data collection, I draw heavily on my own injury and what I consider “my TBI.” But the Social Life of TBI is not an autoethnography as commonly understood (Anderson 2006), nor is it a

“Confessional tale”, to use Van Maanen’s (1988) influential and more accurate terminology. Instead, I lightly embody my ethnography by harnessing without becoming beholden to my own biography, emotions while in the field, or personal reflections on devising and collecting data.

The first three sections of the chapter explore this semi-autoethnographic methodology more in-depth. In keeping with older anthropological tradition, my research

14 Numerous articles and monographs have been published on this subject over the last 30 years, and many more before that. For a good accounting of all of these, I would direct my reader to some key articles that served as my introduction to the “reflexive turn” in ethnographic methodology, sociology, and anthropology (see for example Goodall Jr. 2000, Rabinow 1977, Rosaldo 1989b, among others). However, as I lay out in this chapter, I remain convinced of the value of a well-told ethnographic tale, even if it does not achieve the aims as outlined in traditional ethnography (e.g., Geertz 1973, Van Maanen 1988, cf. Malinowski 1922), especially one that is tempered by but not beholden to autoethnography (Field-Springer 2020, Turner 2000).

is based in a single setting that I selected for its relevance to the subject (LeComte and

Schensul 2010): the city where I lived and received acute medical and rehabilitative care after my own head injury, Seattle. While in the field, I reacquainted myself with the city that played such a key role in my own story, conducting numerous fieldwalks in the neighborhoods and environments in which both I and my informants lived. These walks both helped me reflect on and update my fieldwork methods, helping me to pinpoint the specific role that environment and context play in the social object of TBI. I thus harness without becoming beholden to my own biography, emotions while in the field, or personal reflections on devising and collecting data.

After this more autoethnographic beginning, I spend the remainder of the chapter discussing my preliminary and tri-partite fieldwork schedule. I conducted it via three phases that were less separate research periods and more groups of methods. They derive directly from Lock and Scheper-Hughes’ (1987) famous “Prolegomenon” for work in

Medical Anthropology calling for studies to simultaneously address the: individual, social, and political bodies of medical subjects. I discuss the origin and purpose, theoretical backing, sampling procedures, and data collection methods in each phase before offering a slight preview of the general conclusions each led me to. The first of these, the “individual body,” focuses on thirty individual survivor-informants and their social relations with others. The phase primarily draws on and furthers phenomenological theory and narrative methodology. The second, the “social body,” consists of case studies of 8 participants and their families and caregivers, and daily social experiences. This phase mostly explores the ways that TBI is performed in daily life, in a more performative and disability studies sense. The third and final phase, TBI’s “body politic,”

investigates laws, public policies and organizations, and NGOs who work with TBI survivors. These actors and the confusing and often ambiguous policies and programs they implement facilitate the positive and negative outcomes experienced by both survivors and their significant others. Together, these three phases comprise distinct clusters of theory and methods that allow me to uncover the multiple, intersecting, and sometimes contradictory meanings of TBI. This chapter thus traces how research that originates in and grows out of my own experience results in the solidly ethnographic and anthropological analyses and conclusions that follow.

Blurring the Line Between Autoethnography and Ethnography

My interest in and exploration of TBI from a social scientific lens is not merely scholarly. It is also personal: I embody the very subject of my research. As such, it is an example of “embodied ethnography” (Turner 2000, Spatz 2017), including body and bodily experience of the researcher in its methodology. I strategically and purposefully drew on my own identity and experience as a survivor to develop research questions, propose a methodological plan to assess those questions, and conduct the ethnographic investigation that resulted in this dissertation. Yet my own TBI caused some difficulties in my fieldwork, as I struggled to manage my own impairments, relations with informants, and the myriad demands of complex and thorough ethnographic research. I was in effect living The Social Life of TBI.

My own story began 17 years ago. In April 2003, when my post-college Fulbright

Grant to conduct my first ethnography in Kuwait was put on hiatus for the Iraq War.

Continuing my research in Cairo, I was struck in the head by a tourist bus while

attempting to cross the street and sustained a severe TBI. While still in a coma, I was med-evaced from Egypt to Seattle, where my parents lived and did not regain full consciousness until six weeks later, in a sub-acute medical center south of Seattle. It fell to my family and friends to research and facilitate the entire journey and fight with my father’s medical insurance company to pay for it, which they were at first refusing to do without extensive medical and legal documentation that took years to obtain. Once I was fully conscious, I undertook my own rehabilitation with gusto and was transferred to an inpatient rehabilitation facility at Seattle’s only Trauma 1 hospital and then home to my parents’ house. At that time, three months after I sustained my TBI, I was still unable to walk unaided, had a host of other physical impairments that hampered my ability to live without the constant supervision and assistance of my parents, and struggled with

“severely impaired” to “impaired” levels of cognitive function.

Over the next several years, I regained many of my pre-injury cognitive and physical capacities, though they were greatly altered by the injury. Not understanding this at the time, I attempted and failed several times to resume my academic pursuits in cultural anthropology. Over the next 10 years, I returned to my pre-injury Fulbright

Grant, travelled on the grant money I had saved to regain my pre-injury knowledge of

Arabic, and then pursued a Master of Public Administration degree at the University of

Washington (UW) in Seattle. I was able to complete each of these activities, but I could not do so without assistance. Even then, my effectiveness was greatly hampered by my unaccommodated disability. When I finally returned my pre-injury ambitions in academic anthropology, I did so with balance, double vision, memory, aphasia, and emotional

control and other small impairments that all would increase or decrease in intensity and sometimes appear or disappear throughout the day.

None of these seemed an impediment to academic work, at least not at first. Yet the multitude of minor annoyances these problems caused, along with my impaired psychological responses to them, ultimately caused me to struggle in the program.

Despite passing all of my courses, I was constantly if unintentionally harassed by faculty and graduate students who questioned the reality of my impairments and even my status as a survivor. I assumed and was told by several of them that because I was able to function at a relatively coherent level in most class discussions, they had difficulty accepting that I could have a disability. These minor conflicts and difficulties snowballed, and I found myself forgetting appointments, stumbling over nothing at all, and unable to complete academic assignments. I sought out the help of a psychologist for the first time since surviving my head injury years earlier, and she suggested that I take a break from my program. Thus, after three years of attempting to build on my own experience and help to further the anthropological study of disability (e.g., Ingstad and Whyte 1995,

Kasnitz and Shuttleworth 2001), and what is coming to be called disability anthropology

(see for example Ginsburg and Rap 2013, 2020), I gave up and returned to my hometown, unsure if I would return.

When I arrived at my parents’ house in Seattle to begin my leave, I did so with the core intent to focus on recovering my well-being and sense of self as both a valid person and a survivor. I began receiving TBI-related rehab counseling while volunteering with a local brain injury NGO and attending TBI events and groups. Speaking of my own experience with the survivors I encountered at the time, I began to realize that we shared

many common experiences, despite having diverse injuries, symptoms, and experiences.

These seemed to come from our social lives, which biomedical rehab does not treat but which were often discussed at the meetings I attended. I reflected on my own recovery and studied those elements of anthropology that helped me make sense of my own experience. At the same time, I worked with my advisor when I went on leave to develop an anthropological study of the injury that had begun to take shape in the last year of my coursework. TBI appeared frequently on the margins of several key works used by medical anthropologists (e.g., Kleinman 1988, Young, 1995, Mattingly 1998, Moser

2011) but was rarely acknowledged as such in these works. Moreover, the injury and its bodily consequences were never the subject of investigation in these studies.

I attempted to understand this lack of anthropological scholarship by reflecting further on the extremely diverse though singular community that helped me during my leave. In the proposal, I attempted to harmonize this lack of anthropological scholarship and develop a plan to address it. The process was a collaborative one, as I discussed my study ideas with survivors and the clinicians treating me on my leave, gaining their feedback on and updating a research proposal I had begun developing a year earlier. No one I spoke to in the city had a background in anthropology or even the social sciences and they were unable to help or comment on the more theoretical and esoteric aspects of the proposal. But they nevertheless helped me develop and plan out the study in such a way as to respond to their own particular concerns while addressing the broader social correlations that I read about in public health literature like homelessness and suicide.

Clearly, there was much more going on than current anthropological scholarship could account for. My study thus aimed to address that gap while also informing the policies

and programs that existed for TBI in Seattle, drawing on my earlier training and work in policy analysis and NGO development in the same city. The study that I eventually proposed deliberately blurs the line dividing researcher from research, as it grew out of and addressed my own experience. I not only identified with my subject matter; I embodied it and used my embodiment to craft the study.

While in the field, I even completed a fellowship with the Association of

University Centers on Disability (AUCD) through the Sonoran University Center for

Excellence in Developmental Disabilities (SUCEDD) that critically and reflexively documented my life and experience as an embodied ethnographer (Duncan 2018). At the end of this distinctly autoethnographic side project, I found that my inside status and shared identity with my informants aided my larger research in 3 distinct ways: first, access to diverse informants who did not share a common or biosocial identity (as one of my survivor informants put it, “I’m only talking to you because you’re different—like us—and I trust you to get the word out”); second, insight into the meaning of each of their experiences (I and many other TBI survivors frequently have mood swings that are not commensurate with our circumstances; knowing this I did not let others’ momentary spikes of anger, frustration, or excitement unduly skew my analysis of their stories); and third, credibility to maneuver without interruption among survivors, their friends and families, and local policymakers and NGO staff serving them.

These three benefits of my “lightly embodied” methods also created problems for me in the field, which is itself indicative of the feedback loop between interaction and impairment that I identify in this dissertation. One day, I was accepted to participate in the official WA State TBI Council in the morning, volunteer with a local TBI NGO in the

afternoon, participate at an event for survivors in the evening, and then had to cancel an interview the next day while I recovered from the resulting fatigue (Duncan 2018). This unique combination of access, insight, and credibility was only possible because of my identity and embodied experience as both an academic researcher and survivor; at the same time it exacerbated the effects of my own TBI on my stamina as a fieldworker, even as my focus of remained more traditionally ethnographic.

Ultimately, one year of fieldwork was not adequate to illustrate the full extent of the Social Life of TBI. It was enough to suggest some of the social processes that led to many such drastic social outcomes in survivor-informants’ stories, including social isolation, poverty, and homelessness. These and other social outcomes of TBI have long been noted by medical professionals, social workers, and psychologists who treat TBI survivors (Lafferty 2010, Lorenz 2010, Mattingly and Kendall 2013, Oddy et al. 2012).

Their studies have not yet received much social scientific attention and more than one anthropologist expressed skepticism when I mentioned them. Many of my informants experienced one of these at the time I interviewed them or had experienced one the recent past. Several clinicians, rehab therapists, and health researchers that I encountered during my year of fieldwork suggested that I focus on these outcomes. Yet this is not the goal of my ethnographic study, which is focused more on identifying how TBI is embodied and constructed in social interactions.

In the final analysis, by researching the social lives of survivors with the same injury as me, by myself planning and conducting ethnography with them, their families and friends, and the NGO and governmental staff whose work focuses on them, and by analyzing the resulting data as one who identifies with that data, I was very much living

The Social Life of TBI. Rather than autoethnography, the process of developing this study convinced me that differences among survivors required a much broader study. My own identity also directed me to look away from survivors’ own stories to see the importance and centrality of significant others in their lives.

Lightly Embodied Ethnography, Positionality, and the 3 Bodies

Throughout human history, TBI has been treated by clinicians in many cultures throughout human history (Moore et al. 2012). But it has only recently appeared at the margins of works in medical anthropology and related social sciences, as I noticed in my graduate studies. Few studies mention the injury directly—usually glossed simply as a

“head injury” (e.g., Krefting 1987). Others take up but then disregard the lives and stories of TBI survivors in pursuit of other intellectual questions, including influential works by

Merleau-Ponty (1964), Kleinman (1988), and Mattingly (1998). Still others unknowingly conflated TBI, of which they were presumably unaware, with the mental illnesses with which it is frequently co-morbid (Bryant 2011). Young (1995) for example conducted an ethnography of veterans being treated for PTSD at Military Medical Centers in the

Eastern US. He concludes that the disorder is a construction of the treatment strategies used in military medical centers. Yet several patients in the treatment facilities had unaddressed head injuries of varying severity that I immediately recognized, which would have significantly influenced their psychological states. While I conducted these studies, multiple anthropologists in my department insisted that my injury was of similarly recent origin, despite overwhelming evidence and scholarship to the contrary.

The move seemed designed to erode any legitimacy I had earned through numerous severe bodily and emotional traumas.

At the same time, a small number of largely clinical and clinically-oriented studies from disciplines like Nursing and Family Studies did examine the repercussions of the injury on the lived experiences of survivors outside of clinic walls. McIntyre and

Kendall (2013) for example, analyze how TBI becomes a central the lives of survivors’ families and support networks. They note how “families are an essential part of the rehabilitation process…however, family relationships are prone to deterioration following TBI” (58). Lorenz (2010) identifies what she refers to as the “lived experience” of brain injury by giving survivors cameras for three to five days and then interviewing them about the pictures they took. The pictures and the stories she analyzes often have little directly to do with brain injury and are instead symbolic of survivors’ lives. These clinical studies demonstrate how TBI affects much more than survivors’ individual bodies and minds, which aligns with anthropological theories about the expansive and even shared nature of human illness even as the injury itself is never explicitly addressed by those theories (e.g., Kleinman 1988, Good 1994, Ablon 2002, Mattingly 2010,

Wahlberg 2018).

The methodology I proposed and adopted to address this lack in social scientific attention blurs the distinction between traditional ethnography and autoethnography, landing in the realm of “embodied ethnography,” implying simply that the ethnographer embodies the subject of their study and includes themselves in their research (Turner

2000, Spatz 2017). But I only do so to a certain extent and my research remains more ethnographic than autoethnographic, as many define it (cf. Field-Springer 2020). Mine is

a “lightly embodied” ethnography that draws from but does not belong to autoethnographic methodology. Lightly embodied ethnography fits with both traditional and contemporary anthropological methodologies. As with all ethnographers, I myself am the instrument that collects, records, and analyzes my data (Strauss and Corbin 1990, Van

Maanen 1988). Malinowski (1922) in a classic example, mentions how he was “suddenly set down” in his fieldsite and immediately set up questioning villagers about their activities and recording “facts” about their lives, all the while going through “periods of despondency… tropical depression and boredom” (4).15 But unlike his traditional orthodoxy and in line with many post-modern (Rosaldo 1989a), post-colonial

(Obeyesekere 1992) and more contemporary disability anthropologists (Kasnitz 2020,

Kasnitz and Shuttleworth 2001), I am also disabled, belong to my informants’ community, share their medical diagnosis, and make no pretense to being a true outside observer.16 Yet mine is less a truly autoethnographic project (cf. Field-Springer 2020) and instead, as I lay out in this chapter, I use my own experience to better assess and understand my informants discourse and actions.

My own TBI plays an integral, if peripheral, part of my research and continues to appear in each chapter that will follow. Of contemporary ethnographers, I most closely resemble Manderson (2011), who mentions in a recent work on chronic impairment how she herself gained one of these impairments but does not derive her conclusions from it.

15 Of course, the posthumous publication of his diary (1967) undercut his pretense to objectivity, but the strength of ethnographic methodology was not diminished. In keeping with tradition, the data coming from my fieldwork consist of others’ narratives, interviews, and experiences. 16 An interesting twist on this development that is relevant to my research is the role of some anthropologists writing of their own experiences caring for and in some ways sharing in the disability experiences of a loved one. Faye Ginsburg and Rayna Rapp exemplify this type of anthropological positionality, writing accounts of “entangled ethnography” (2013b), through which they reimagine what human relations like kinship means for the disabled and others, like themselves, within “disability worlds” (2013a), among others.

While my own TBI is not the focus of my study, it is a foundational part of the lens through which I analyze the stories I share in the following chapters. I only focus on it now to more transparently and clearly elucidate my methods, findings, and conclusions, as Malinowski himself urged (1922: 2). I use this lightly embodied approach to identify a significant gap in social science literature, how existing accounts of TBI are inadequate to describe my own lived experience and, as I found during fieldwork, the lives of my survivor-informants. I developed research questions to address that gap, devise an effective and original methodology them, and adjust my methodology while in the field.

My own identity with the subject of my ethnography thus plays a central role in my research but it does not serve as the target of that research.

The Social and Political Setting of a Lightly Embodied Ethnography

One of the hallmarks of anthropological theory and ethnographic methodology since the discipline’s inception is its attention to the role that social and environmental context plays in social and cultural life. The same holds true for survivors’ lives and social worlds in Seattle. The city was not the location of all my informants’ injuries. Yet it constitutes an integral part of all their experiences “with TBI,”17 and as such helps to constitute the meanings of the acronym that appear in and influence their lives.

Moreover, for all of my informants, living “with TBI” in this way means receiving help with diverse tasks. Nearby family, friends, and even neighbors do this in many cases, as do local government agencies and NGO actors. All of these are located in Seattle, which

17 Since a head injury occurs in a single event, following which the brain continues developing in ways that are experienced by survivors as “healing” and “improvement” for the remainder of their lives, the most logical expression would be: “after (a) TBI.” This curious phrase is commonplace, as discussed at length in chapter 4.

is largely constitutive of my informants’ experiences with the acronym TBI. I have thus attempted to invoke the city in each of the chapters that follow.

Seattle has a long history as a US pillar of medical research, education, and treatment. It has numerous medical centers, rehabilitation facilities, and hospitals, some of which are among the highest ranked in the country.18 Seattle is also home to the

University of Washington’s top-ranked medical school and attached Department of

Rehabilitation Medicine. The Department oversees the city’s premier hospital,

Harborview Medical Center (HMC) in downtown Seattle, and its own University of

Washington Medical Center (UWMC) to the north. Survivors who are treated at these locations are given a packet of information upon admission and discharge that includes pamphlets about local NGOs and services for survivors in the area. These include information for the WA State TBI Council the official State TBI Resource Line, local

Brain Injury NGOs, and the State TBI Council as well as relevant medical information, all of which will be discussed at length in chapter 5. Conducting my research in Seattle also allowed me to access treatment at these facilities during data collection activities, making surviving the travails of my first extended fieldwork viable.

Additionally, the UW is home to one most significant TBI Model Systems

(TBIMS) in the country. I initially spoke to the coordinators of the UWTBIMS in 2016, at the start of my medical leave. At the time, I was developing the study and was much more open to ideas for directions from outside of anthropology. Two members of the

18 Several of these are highly-esteemed medical centers. Harborview Medical Center (HMC) serves as the Trauma 1 Center for Alaska, Idaho, and Montana along with Washington state. A significant portion of the hospital, which has in the last 10 years grown to include three buildings of specialty clinics, offices, and laboratories, is taken up by the rehab medicine clinic, including separate inpatient and outpatient wards. While HMC facilitates rehabilitation from multiple forms of injury, their website claims that “Primary patient populations that we serve are spinal cord injury, traumatic brain injury, and stroke patients” (https://www.uwmedicine.org/locations/inpatient-rehabilitation-harborview).

UWTBIMS team met with me and we discussed the potential for medical anthropological research on TBI. They encouraged my research and suggested that the Model System could play a significant role in the study, serving as the source from which to sample and recruit potential survivor-informants. They noted that the support groups I had been attending for years and with whom I was connected had a limited and homogenous population relative to theirs. I agreed, because an ethnography that recruited only from the groups, while potentially quite rich, seemed less likely to access the true shape of TBI in the city by limiting its sample size and diversity. I had initially intended them as the source for fifteen research participants, half of my survivor-informants, but only four answered my recruitment email that the UWTBIMS sent out to their entire network. This was not a detriment to my research, however, as I was able to interview one of the four more in depth and was also able to recruit the same number of survivors who were not affiliated with support groups at events organized for survivors around the city.

The most central element of my study’s setting is the city Seattle itself. Largely owing to its position as a center for the new technology-based economy in the US, the city has seen enormous and rapid development in recent years. Thanks to such firms as

Microsoft, Amazon, and related tech startups, the wealth of the wider Seattle metro area, had reached over $350 billion by 2018 (Duffin 2019). The tech sector, whose office buildings now take up several blocks of the city’s urban core, has led to the construction of several new luxury condominium buildings in areas that used to house more affordable and much smaller apartment buildings. Many of the remaining older apartment buildings in neighborhoods throughout the city have been upgraded, driving up rent prices

(Samuels 2018). None of my survivor-informants are able to afford these new luxury

units and have been forced to move out to more affordable and often less secure neighborhoods. Some have had to move out to neighboring counties, taking more expensive long-distance buses to work or their medical appointments. The three counties of King, Snohomish, and Pierce have responded to this development by improving infrastructure and public transportation options, which are ADA accessible, including for

TBI survivors. Survivors with documentation from a registered medical center can receive a discounted fare card because of their injuries that supports travel by any public service in the state. Additionally, owing to the state’s strong embrace of the 2010

Affordable Care Act, poorer members of the city can apply for Apple Health, the state’s comprehensive Medicaid program. The program covers all services that might be recommended or required for TBI survivors, including inpatient and outpatient rehabilitation at the UWMC and HMC. Given the ease and affordability of public transportation to both of these locations, the city is thus well-suited for the medical needs of survivors, but housing and living costs greatly detract from this.

Seattle is also home to another of the pillars of TBI activity in Washington State, the Brain Injury Alliance of Washington (BIAWA). The organization, which appears in each of the following chapters, serves as one of the primary sources of formal information about TBI in the city. They also host events attended by many survivors, their significant others, and others who work with and for survivors in the city, as well.

According to one staff member, “When folks are looking for support after their injury, they need to get connected to something, (but) they might not know what. We help them figure out the what the who the where and the how.” Many though not all survivors I spoke to in the city did not understand that the organization provides this service. But the

organization works with many thousands of survivors per year. As such, even though it was not central to all of my survivor-informants, it was still one of the largest and most influential actors in what I discuss as the Social Life of TBI.

The city may be the state’s economic center and largest city, but it is not the legal or administrative center. That falls to the city of Olympia, located over an hour away on one of the state’s main highways, Interstate-5. The city is home to the state’s governorate,

Capitol building, and most administrative headquarters. It is also central to the story of the Social Life of TBI in the state and will be discussed in depth in chapters 5 and 6. For now, it suffices to say merely that Olympia is home to the Washington State TBI

Council, mandated by the landmark 2007 “Tommy Manning Act.” This body was established to discuss TBI, plan activities to increase public awareness about it, and fund

TBI support groups and NGO initiatives in the state. Only a few of my survivor- informant even knew of its existence, however, largely owing to the fact that was based outside the city and hosted its primary awareness-raising event, the annual WA State TBI

Conference, outside of it, as well. The Council’s bimonthly sessions are open to the public and I attended as many as I could. At these day-long meetings, I conducted policy interviews and observed the actors who make up what I discuss below as the “body politic” of TBI as they discussed minutia about the injury and voted on TBI-related recommendations to present to the state legislature.

Together, each of these elements constituted a large part of my research. They appear in each chapter of my dissertation, showing how the social object of TBI is more than the concern of individual survivors and their significant others. It emerges from specific physical and social contexts, imprinted with their specificities, such as the

taciturn politeness of Seattle’s public culture, known by many of my informants as the

“Seattle Freeze,” or the city’s famously liberal but also neoliberal entrepreneurial mindset that I discuss more in chapter 5. As such, to truly present the TBI that is at play in my diverse informants’ lives, I have to first describe the setting in which it takes place.

Field-walks: Bridging Participant-Observation and Embodied Ethnography

Seattle is famous for its setting in the Pacific Northwest. It is for good reason known as “The Emerald City” because of the lush vegetation spilling out of every nook, crevice, and planter box on city streets. Many of my informants mentioned this as the primary reason they were happy being bound by their circumstance to the area, and I happily concurred. The area is located between two large mountain ranges, the Cascades to the east and the Olympics in the west. These in turn border on the Pacific Ocean to the west, directly connecting to the Puget Sound, which lays between them. The natural beauty caused by this combination of tall mountains and vast bodies of water leads to

Seattle’s other famous though less glamorous moniker: “The Rainy City.” The city itself sits in the middle of this environment, bordered on the west by the Puget Sound—beyond which lie the Olympic Mountains and the Pacific—and the east by Lake Washington, beyond which lie the foothills of the Cascade Mountains. The city itself contains both a large lake just north of downtown—Lake Union—and the mouth of a large river, southwest of downtown—the Duwamish. The overall environment is extremely temperate, rarely becoming dangerously cold or hot, and its famously ubiquitous drizzle provides for the near-rainforest levels of dense and quickly-growing vegetation.

Owing to anthropological convention from the time of Boas and his students, and in keeping with my MPA training in international NGO development, I began my fieldwork with purposeful field-walks. These walks served to familiarize me with the environment and physical setting of my ethnography. They also gave me the opportunity to reflect on the experience that I had while conducting my fieldwork, which served my work for my AUCD fellowship and helped me reflect on and modify my data collection methods in the field.

My first walk occurred on my fourth day in the Seattle, just after I had met with my key informant, Paul, facilitator of Seattle’s most active brain injury support groups, to plan my data collection activities with them. I walked out of the meeting, headphones on, planning to walk until it became dark—which, owing to the area’s northern latitude, would come at 4:00 in the winter. I did not know the neighborhood in which I was based other than that its reputation for middle class residential homes and small forest parks.

While there was enough light out during the walk, I jotted how I reacted to the cold, dark, and humid environment, so different from southern Arizona’s dry heat. I also noted what it felt like to walk the streets as both researcher and survivor, where I had once been only the latter, along with my survivor-informants. I reasoned at the time that any notes that I jotted down in my jog-book, a small BIAWA notebook I had received the day before, would not serve as data. Rather, in keeping with my proposed methodology, these thoughts would only serve to help me to develop my fieldwork methods and for this reason appear in the present discussion.

I wrote in my field journal that night, in understandably lofty yet ineloquent language (given that this was my first professional field assignment post-injury, it is understandable):

This afternoon, I went on my first village walk [the term we used for it in my MPA program] as an ethnographer of Seattle. It was sodden [sic], slightly windy, and the light was a flat and dim grey. The humid and cold air felt snug, comforting, and almost supportive as I moved through the middle-class neighborhoods of West Seattle. As I walked, the sounds of aging Pearl Jam (one of Seattle’s most famous rock bands of my youth) filled my ears, and the thought passed through my mind for the first but certainly not the last time that the walk was a perfect analogy for my injured life. It was meandering, with dim and swirling weather that frequently had moments of unexpected clarity as its anxious fog gave way to bright focus and purpose in fits and starts. The music was what I often listened to during my pre-injury days in the city, now decades- past. Listening to it gave me a further connection to the place, or at least my own memory of the place from before my injury. These memories seem almost clearer and closer to me than my post-injury memories, as they are for many of my survivor-informants, shrouded by the fog of brain damage that I analogized to the fog and dim light of this winter’s day.

After maybe an hour of this wandering, finding myself next to a dark green park I described in my field notebook as “pseudo-rainforest,” I realized I had gotten lost. Worse, it was becoming late and I had to quickly find my way back before it became dark. This too was related to my injury, as I often become so caught up in one task or thought that I can lose track of things like place and direction. Also, my concern over getting lost in a new neighborhood after dark was much less a fear of danger than of getting lost without being able to see landmarks like hills and distant mountains that I remembered form my youth and years of rehab and recovery in the area. As a result of finding myself lost, I headed back to my apartment as quickly as I could, cutting short an otherwise enlightening walk, resolving to make the practice a regular habit.

I continued going on these walks throughout my fieldwork, both as a way to reflect on my experience and to help me further develop my fieldwork methods. They gave me a sense of stability during my fieldwork and helped me connect to the physical

environment in which my informants lived their lives and experiences “with TBI.” I do not use the walks as data for The Social Life of TBI but to locate and ground my data and analyses within the very real and constitutive settings of the city.

I now use the insights I developed during my many fieldwalks around the city to understand the importance of what my informants related to me that I might otherwise have missed. For example, Frank mentioned the importance of “the little things” multiple times in interviews. These matters often seem insignificant to others, he told me, such as remembering where he put a pen or taking the correct turn on his way to the store. These trivialities can “make or break” his day by souring his mood so much that he forgets or is late to other appointments, some of which can be as important as picking his son up from school. These otherwise insignificant problems thus grow into much larger problems that can have much more drastic and lasting impacts on his health and wellbeing. It was only by recognizing the potential for these “little things” in my own daily life to lead to larger problems down the line—such as losing my way in an unfamiliar neighborhood after dark as I was lost in my own thoughts—that I began to understand the full import of what he and my survivor-informants, along with those around them and policymakers in the city were trying to tell me.

My reflective field-walks were ultimately not part of my data. I did not code or analyze them along with my interviews, nor do they figure in my conclusions, but I used them only when they help clarify otherwise inexplicable or unremarkable comments made by informants. I also shared my field-walk reflections with my informants to deepen our rapport, to get them to reflect on their own answers to my questions during our interviews and understand the physical environment in which they operated. Finally,

it also helped me to reconnect with myself, realizing that I, as a true participant and observer was not only of studying the Social Life of TBI but living it as well. Although these fieldwalks were not part of my data, like my embodied experiences they played an important role in the collection and analysis of that data, to which I now turn.

Preliminary Investigations

Although I had participated in support groups for years before this study, I did so personally and not in an observational or ethnographic manner. My preliminary research in the summer of 2017 was thus to begin to identify what I would need to investigate once my formal fieldwork began at the start of 2018. Working with groups that I had already known and who had played an important role in the development of my research,

I interviewed several survivors to determine the most salient “intersectional” factors in their lives and experiences with TBI.19 Disability Studies has shown that these characteristics, such as race, class, and gender, are largely constitutive of the disability experience in America today (e.g., Garland-Thomson 2011, E. Samuels 2014, Kafer

2013), and I assumed that this approach would directly inform my sampling in later phases of research.

Hoping to access the importance of intersectional factors that I expected to find, I interviewed several members a small group of brain injury survivors who volunteered

19 Intersectionality seemed like it should be a key factor in every element of the Social Life of TBI. The concept, first developed by black feminists (Crenshaw 1991) to highlight how mainstream feminism had failed to understand or explain their experience as black women in the US, is well suited for every situation where there are multiple identity factors at play, including disability (Garland-Thomson 2011, Kafer 2013). My informants were white and persons of color, wealthy and poor, men and women, gay and straight, and a host of other identities. Yet none of these seemed more important than the sheer fact of their having survived a brain injury, which is itself more common among marginal populations in the US, including non-white races, poor people, the homeless, LGBTQ (CDC 2015). Clearly, as I discuss in Chapter 7, more targeted research is needed to do justice to the role that intersectional factors play in the meanings of TBI.

with the BIAWA. Half of them were not white, none of them were wealthy, and two of them were gay. Unlike what I expected to find, the characteristics in their stories that proved most salient to my research questions were the specifics of their own injuries. In other words, instead of revealing intersectional social trends, each survivor’s story of their brain injuries subsumed them.

This was repeated throughout my fieldwork, as when I asked survivors to speak about their injuries, they presented particular stories that at first glance shared nothing aside from the initial injury. A number of my survivor-informants lived in significant poverty, getting by only on public assistance from SSDI. But even they have remarkably diverse housing amenities, health statuses, and social lives that depending on a host of other factors, none of which stood out more than others. Intersectionality is thus clearly evident in the data I analyze and present in the chapters that follow but is not distinct enough of an influence to isolate enough for me, a white male, to say without more data.

Phase 1: Phenomenology, Narrativity, Particularity

Almost all existing studies on TBI concern the first of Scheper-Hughes and

Lock’s “bodies”, the individual body. Some (e.g., Mbakile-Mahlanza et al. 2015,

McIntyre and Kendall 2013) look beyond the individual body but do so in the service of individual survivors’ “recoveries” (e.g., Lorenz 2010) or “rehabituation” (Manderson

2011) and thus retain a concern with the individual. I began my fieldwork where this research ends, investigating survivors’ lives outside of biomedical care from a phenomenological perspective that was never only individual.

As noted in the introduction, the first theoretical approach that I explored was phenomenological, and I based my first phase on this approach. Phenomenologist

Merleau-Ponty noted this in his work long before “Traumatic Brain Injury” was treated as such. In The Phenomenology of Perception (2012 [1945]), he describes “Schneider,” a brain-injured man who is unable to move without seeing the movement occurring, to highlight the interconnectedness of brain, mind, perception, and world. Schneider’s case, he argues, can only be understood by assessing him, his bodily symptoms, and his existence in the world in concert. Heidegger’s (1953 [1927]) concept of “being-there” or

Da-sein similarly implies that to exist always means to exist in a specific context. That context is particular to individuals at the same time as it is also always already populated and constituted by others. According to both to these philosophers, no one ever experiences the world free from the influences of other human and non-human beings.

TBI survivors must existing in this state of co-dependence, as well. Their TBIs are not only their head injuries but are part of lifeworlds that constitute and are constituted by multiple others. I thus sought in my first phase of data collection to understand TBI as not merely a static aspect of individual lives and bodies, as other existing studies have done, but as a constituent part of a broader picture that is set in a specific social context that is always changing.

Cultivating contacts and rapport with Seattle’s TBI community, to which I will return in Chapter 6, upon entering the field I immediately began participant-observation for my first phase at Seattle’s weekly TBI support groups. At the groups and events, I recruited individual survivors to participate in my research as survivor-informants. To narrow potential candidates and to avoid complications that come with minor TBIs

(concussions), young or old age, and military status, I only conducted interviews with survivors who sustained a moderate/severe TBI (involving a loss of consciousness for at least 30 minutes), were between the ages of 18 and 75, and were civilians. I also began volunteering at attending events by local NGOs, companies, and State government agencies that work with survivors to wet my feet in the political and non-profit sectors on which many of my survivor-informants depended. At the same time, I worked with the

UW TBIMS to develop a recruitment letter. Once edited and approved by their own IRB, it was sent out to their thousands of registered participants, who could respond to participate in the study.

During this phase, I sought to understand TBI through my survivor-informants’ lives and experiences via their own words, specifically their own narratives of injury, recovery, and life afterwards. The collection of narrative has been a central anthropological and ethnographic procedure since the methodology’s inception (Wikan

2000) but the collection and analysis of narrative has special currency in medical anthropology (Mattingly 1998). It allows those who research medical patients, practitioners, and the technical and esoteric world of contemporary biomedicine to access that world’s wider effects on culture and society (Kleinman 1988, Riessman 1993). As such, the study of narrative is ideally suited to a study of the phenomenological and embodied aspects of such a complex and diverse injury as a TBI. Owing to many of my survivor-informants’ speech and language-related impairments, the data these interviews produced often consisted of “broken narratives” (Kirmayer 2000) and “little narratives”

(Mattingly 1998). Survivors’ experiences in this way become episodic and only make sense when interpreted in light of each other. Moreover, the analysis of survivors’

narrative analysis grants access to phenomenological aspects of their lives that lay outside the ken of biomedicine. Mattingly (2010) proposes a “narrative phenomenology” to indicate the ways that narrative comes to not just represent but shape and in many ways become phenomenological experience. Survivor’s narrative are more than just tales of experience; they are that experience. The narratives that comprise the bulk of the data I collected during the first phase grant more than a window onto the meaning of the stories survivors tell, they themselves constitute that experience.

Once a survivor had agreed to participate in the first phase, I would ask for a time and location of their choosing to conduct the interview. I would tell them that these could last thirty minutes to three hours, according to their preference and how much they were willing to share. These interviews consisted of three parts. The first of these, following

Kleinman (1988), Mattingly (1998), and Manderson (2011), elicited survivors’’ narrative accounts of their own “life and experience with TBI” however they defined it. I refrained from offering comment or follow-up questions to these narratives, preferring to let survivors speak for themselves and their own particular experiences. The second part consisted of a series of four semi-structured questions with specific prompts for information that had emerged as salient to survivors’ lives during earlier research. It was clear that a great many of my survivor-informants had never been asked questions about their relationships and social interactions before, though they all had shared their narratives before.20 I concluded this part of the interview by asking my informants about the policies and programs for survivors that they knew of, used, or would use if

20 I included a question about when survivors shared their stories in my semi-structured interview questions, and surprisingly every one of my survivor-informants answered this question. I discuss the reasons why this was so in the next chapter.

possible.21 The final part of all of my interviews sought direct feedback on what I was noticing in the field, following the recommendations of grounded methodology and scholars from symbolic interactionist and other ethnographic traditions (Strauss and

Corbin 1990). I would begin by disclosing my own injury and its effects in my life, surprising some of my informants and strengthening rapport with all of them. I would then list the underlying patterns and broad themes I saw in their narratives, mentioning how I saw their story fitting in with the literature and my other informants’ accounts.

Many of them knew other survivors already and already understood a great deal of what I would tell them. However, none of them had approached the matter in a systematic or social scientific approach before (even one informant who had been trained and served as a TBI counselor), and all offered insightful comments.

Methods used in Phase 1 of my research included a novel approach to studying the injury through survivors’ narratives. The narratives I collected elicit elements of survivors’ lives that standard biomedical and rehabilitative questionnaires and interviews that I have taken as a survivor never cover. These narratives highlighted the particular details of my survivor-informants’ stories, justifying a policy-informant’s favorite phrases: “If you’ve seen one TBI, you’ve seen on TBI.”

Phase 2: Performativity, Significant Others, Case Study

Phase 2 built on this particularity to locate and define TBI in the diverse circumstances in which individual survivors exist. It builds on theoretical ideas from

21 In addition to serving as leads for potential Phase 3 participants, this method informed my survivor- informants of any aid and services they may not have known about. The question thus served a dual- purpose in empowering survivors.

more contemporary medical anthropological accounts that see health conditions as enacted and performed as well as embodied (Carr 2016, Martin 2008, Mol 1998, 2002).

This phase approached the injury as a reality for those around TBI survivors, on whose lives it affects nearly as profoundly (Kendall 2013). Data collected was much more extensive than in the first phase, consisting of case studies of Phase 1 participants along with their caregivers, families, and daily social contexts in addition to continued participant observation at support groups and community events. The phase thus approached TBI from a perspective which examines the interconnections between humans and their surrounding environments.

I developed this phase of fieldwork in response to several more critical developments to come out of medical anthropology and social theory in recent decades.

These primarily revolve around various aspects of social construction, such as Ian

Hacking’s (1986) concept of dynamic nominalism, which argues that certain categories of person do not precede the devising and construction of the category in the first place.

Young (1995) adopts this perspective to show how PTSD, a condition that is frequently co-morbid with and often confused for TBI (Bryant 2014), was in large part constructed and brought into being through the treatment plans devised to treat it. While records show the treatment of disabling cognitive impairments resulting from head injuries for thousands of years (Boake and Diller 2005), what “TBI” means today is often not derived from survivors’ experiences but rather socially constructed as a concept that is based on those experiences but not beholden to them.

Another approach to social construction is “performativity,” a term coined by

Austin (1975) to describe the use of language to produce action, such as the traditional

marriage proclamation accomplishing the very act that it names. Later feminist scholarship used this principle to show how gender and sex are both performative (Butler

1993). Neither can be fully disentangled from the other and both are performative constructions built upon and consolidating normative ideals of masculinity and femininity

(Butler 1993, Kafer 2013, Morris 1995). Individuals are pressured by their surrounding society to conform to these ideals as their right and natural states. They cannot help but fail at living up to these, however, and in their failure they serve to empower the norm as taken for granted and natural goal worth striving for. Those who cannot or refuse to do so, especially those who identify as LGBTQ+, “queer” this norm and in response are rejected by much of mainstream society as “perverted.”

TBI, in contrast, is harder to track and identify, especially outside the constant biomedical observation and treatment of rehab, but I knew from my own experience that it constitutes a similar type of performativity, at least with those who know of survivors’ statuses. To document TBI’s construction as performative, I developed and conducted eight extensive case studies of individual survivors who had already participated in Phase

1. I selected participants for this phase whose narratives contained socially-relevant factors that would illustrate something important about the construction of TBI. I worked collaboratively with these eight participants to select those caregivers or family members with whose lives theirs were most intertwined. By including others in my case studies, I developed what I and my informants called Case Stories of TBI, building a picture of the injury’s enactment through extensive observation and interviews from multiple perspectives of those who live with TBI, even if the injury was not to their own bodies.

Through these case studies, I hoped to be able to assess what I often heard in the course of my own life, that TBI “happens to families.”

For each case story, individual participants and I would cooperatively plan data collection activities for the case. At an initial meeting, participants selected a good time, location, and occurrence to interview and observe them in what they considered “normal” circumstances, using methods adopted by Mattingly (2010). They would also identify one or two caregivers or close family members who they thought would be most able to discuss their TBIs. At the first of these observing and interviewing sessions, I would visit and spent several hours with them and their families in their homes, neighborhoods, or workplaces. I would jot down notes about their actions, my observations, and any informal conversations we had during this time. Either before or after these observations, we would conduct a lengthy unstructured interview, discussing whatever had happened to them since our last conversations, anything from these that was yet unclear, or anything else they thought would best illuminate their Stories. I would guide our conversations to cover their daily needs and activities, including who they rely on—if anyone—for help.

At the end of the session, I would tell them what I had observed, reflect on how it fit in with both their interviews and my research, and request their thoughts and feedback on all of this. Finally, I would ask for help with scheduling our next session and— separately—their family members or caregivers. Immediately afterwards, I returned home to write extensive field notes on the day’s observations and interviews.

After several more months and after I had interviewed their family members, we would conduct the same session again, taking note of any seasonal or other changes and discussing my overall findings—which by then had grown significantly. Interviews in

this second session would cover the same matters as the first but would always end with a discussion of how they would characterize their lives and experiences with “TBI.” I would ask for their “final word” on their Case Story, making it the focus of the Story that

I would write up during data analysis and send back to them for comments and corrections before including it in as data.

Together, these sessions and interviews resulted in numerous pages of transcripts, observations, and reflections. Though the number of Case Stories is small, the sum total of this in-depth and comprehensive data they contain make up the bulk of the data that support my analysis and conclusions on the performativity, enactment, and resulting social construction of TBI. They also further develop and elaborate findings from the first phase of the research that show TBI as more than a phenomenological or narrative experience. The findings influence every chapter of this dissertation but are the focus of

Chapter 4, which traces TBI as something that “happens to the whole family.”

Phase 3: Policy, Governmentality, Organizations

The final phase of my fieldwork focused on Scheper-Hughes and Lock’s “body politic” (1987), investigating the public policies and programs that respond to and redefine TBI. I designed the phase around social scientific theories about contemporary neoliberalism, biopolitics, and governmentality (Foucault 1977, 2008, Mitchell and

Snyder 2015, Lorey 2015). I also drew on my earlier studies in policy, public administration, and international community development to target the final and shortest phase of my fieldwork at the troubling public data I had come across when proposing the study linking TBI to significant social problems.

My earlier studies greatly increased my knowledge of wider social policies and how these interfaced with contemporary governance (e.g., Lorey 2015), but they also revealed surprisingly little of direct relevance to TBI. There was one glaring exception to this that I was directed to in a disability studies class: there is a strong correlation between TBI and homelessness that has been noted in several studies (e.g., Lafferty 2010,

Oddy et al. 2012, Gainer 2018). As I was developing the study, Seattle’s mayor had declared homelessness in and around the city a “crisis,” setting liberal and conservative pundits ablaze about what caused it and how to address it (Samuels 2018) in ways that reverberated in my survivor informants’ and their significant others’ lives. However, not one of them mentioned TBI in connection with the issue. Was it simply not a problem in

Seattle’s case? If it was, why did they not know about it or speak about it? Were the many relative organizations that addressed homeless and TBI in the city simply unaware of the problem? Ultimately, my preliminary research into the connections left more questions than answers.

Disability Studies offers one solution. Its signature model, the British Social

Model, holds that there is no necessary relation between bodily impairments and certain physical disabilities (Kasnitz and Shuttleworth 2001, Phillips 2011, Shakespeare 2014).

Instead, public policies, built environments, and cultural norms construct bodily impairments as “lacks” (cf. Manderson 2011), which then constitute disabilities.22

Contemporary Disability Studies fleshes out and develops this model, understanding that

22 The classic example is of a public building with a small series of steps leading up to its main entrance. A wheelchair user would have no necessary mobility disability if the door had been built at the ground level or, barring that, if a small ramp had been provided to the door. For diverse possible reasons, these accessibility provisions are not built, thereby turning someone with a mobility impairment but is mobile with certain accommodations into someone who is unable to enter certain public spaces.

there are in fact cases where many impairments, including TBI, can be far more complex and in some cases may not fit within this neat dialectic between bodily impairment and socially imposed disability (Wendell 2017, Siebers 2008). Many anthropological studies of disability adopt positions derived from this paradigm. They focus on how government and civil society organizations construct and respond differently to certain embodiments of impairment and disability, resulting in a system where not all impairments are deemed worthy of recognition or respect (Kohrman 2001, 2003, Nakamura 2006, Puar 2017).

Social safety nets set up to catch those with certain types of disabilities thus fail to catch others, including a large number of TBI survivors, who are neither able to work or receive public support and may end up impoverished and on the streets.

These studies are largely influenced by Foucauldian accounts of society, government, and governmentality. The 20th-century French theorist holds across many of his works that contemporary neoliberal states and societies govern their populations through similar indirect means. In much of his later work, Foucault argued that social policies were largely undertaken by non-state actors and individuals monitoring and regulating their own behavior, which little direct coercion (Foucault 1997, 2008).

Bourdieu (1990a) states that he was influenced by Foucault’s ideas when he developed his influential social scientific theories. He argues that through habitual means, society imposes certain dispositions or processes of mind and ways of action on individuals, resulting in a habitus that individuals take as a natural (Bourdieu 1990b [1977]). Owing to bodily and mental norms, social and cultural differences, and mere circumstance, these habitus do not come to be shared by all members of a given society, leading inequality, social class, and other sociological structures in society. TBI, as something embodied and

socially constructed, could drastically affect this habitus and thus lead to survivors being cut off from others with whom they previously shared affinity in society. This isolation could then leave survivors without many of the social supports that my earlier phases sought to identify. What would happen to survivors in these cases?

The third phase was both the most exploratory and the consequently the smallest phase of my fieldwork. Data collection for the phase was spread over the other two phases. The principle data I collected for the phase came from three different sources, the first of which consisted of standard semi-structured interviews with the very few state employees, NGO staff, and law firms that worked directly with or for TBI survivors in the city. I recorded and transcribed all but one of these, summarizing the last interview only in fieldnotes on my informant’s request. Second, I observed the State TBI Council’s regular meetings every few months throughout the year, at which time I asked informal and off-the record comments of Council members during break-out sessions and breaks at these meetings, recording the meetings and summaries of the conversations in fieldnotes.

I also kept fieldnotes on relevant interactions and policies in the community. Finally, I included questions related to my third phase in all of my other interviews. If Phase 1 and

2 informants did not know of any relevant policies, I simply asked what they would like to see implemented, to both gauge how much the policies and programs already in existence responded to survivors’ needs and to learn of their needs that were not being met. Though these three lines of investigation were not intended to give enough information to conduct a formal analysis of the policies and programs in place, they allowed me to identify the impact on TBI and TBI survivors in the city. With them, I was

able to draw very probable connections between TBI and the seemingly unrelated social problems of poverty, isolation, and homeless that so often accompanied it.

Because this phase was the least significant phase of my research, I did not develop any novel methods with which to collect data on it. However, the standard methods of interviews and participant observation sufficed for the limited conclusions I sought to draw. Additionally, I connected this policy and programming angle to my other more central methods of narrative interviews and case story collection through questions tagged on to the end of each interview.

The final phase of my research attempted to begin to understand how something as particular and contextually-dependent as TBI could have such drastic and seeming unrelated social consequences. I did not have IRB permission to conduct fieldwork with homeless populations at the many informal camps, shelters, and charity kitchens set up for them in the city. I thus used all of my Phase 1 and 2 interviews along with the few

Phase 3 interviews I was able to conduct to identify possible pathways leading survivors to homelessness and other social problems. I then compared them to the policies and programs already in place in the city and state to lay out definite areas where future research is needed, including fields of housing, social work, public health, medicine and rehabilitation, and TBI services, as well as medical anthropology and health social sciences. But because I set out to research the Social Life of TBI with these issues in mind, my methodology was targeted to be of use to these potential future studies. I thus explored the subject as one largely in flux and contested, fought over by outside actors with different understandings and aims of their activities, what one of my formerly homeless survivor-informants referred to as “like a wild west.”

Conclusion

I ultimately fashioned this lightly embodied research plan to allow me to do what other studies have not yet done: to identify the underlying social aspects of TBI among survivors as well as their caregivers and wider communities and to assess them through the engaged lens of contemporary disability studies along with more traditional medical anthropology and social science. My methodology draws on several theoretical frameworks to analyze this broad data, from traditional anthropological and sociological to more embodied and critical methods to accomplish this ambitious goal. My fieldwork’s tripartite phase schedule harnesses the “3 bodies” (Scheper-Hughes and Lock

1987) but expands beyond them. What I discovered using these methods and the theory behind them is how the condition that I and my survivor-informants share, “TBI” is embodied by survivors and their significant others at the same time as it is constructed by them and by government and private policies, organizations, and services, and community groups. It thereby becomes more than the injury, its sequelae, and resulting impairments as discussed in the last chapter, taking on new meanings that are each the subject of the subsequent chapters. This dissertation is thus about more than any one group of informants or the experiences they may share; it is about an injury, the resulting multiplicity of meanings tethered to it, and the political and social effects of that multiplicity as the rebound on survivors and others who are, like me, living the Social

Life of TBI.

Chapter 3: “If you’ve seen one TBI, you’ve seen one TBI”: TBI as Narrative Particularity

Introduction

The physiatry textbooks, journals, and newsletters mentioned in the introduction use accounts of head injuries to paint TBI as a natural consequence of being human in a world with all too many hard surfaces on which to hit one’s head (Boake and Diller 2005,

Tsao 2012). Psychological studies broaden the scope of their investigation of these stories to study the “mind” and the whole “person” that is the subject and author of these stories

(cf. Rogers and Read 2007). But both approaches continue to conceive of their object-- stories and accounts of head injuries--as a discrete set of individual pathologies. This position directly follows from and aligns with the purposes of clinical rehabilitation medicine, and the stories they present make sense within that context.

Most people know little of these clinical perspectives. If they know anything about TBI, their knowledge comes from one or both of two sources: news stories of extraordinary and famous football players, veterans, and injured celebrities on the one hand and the narratives of survivors they have personally met on the other. As the injury is invisible, the latter cases usually come as piecemeal explanations of survivors’ idiosyncratic behaviors or justifications of their needs for special accommodation or assistance. Through narrative, tellers are able to connect a past and momentary injury that may have occurred far away to their current lives and desired future outcomes in a more

or less seamless fashion (Ricoeur 1983, Ochs and Capps 1996). The TBI they contain is thus no longer strictly a biomedical concept based in clinical knowledge or pathology report (cf. Dumit 2004, Mol 2002); it is also a story. Public awareness of the acronym travels through such narrative means, opening it up to narrative analysis and well- established anthropological and other social scientific methodologies (Mattingly 1998,

Riessman 1993, Kleinman 1988)23. Analysis of my survivor-informants’ narratives, constructed from stories that I recorded in a plurality of conversations, interviews, and observations, helps me in this chapter identify a new and distinct meaning of TBI. This new concept, a social object which I call narrative particularity, moves away from the diagnosis of a singular injury and its vast set of possible impairments. Instead, it emerges from and stands for the lived, particular, and narrated experiences that emerge from survivors’ tales.

This chapter begins by building a necessary foundation for the concept, identifying what TBI narratives are, how they are produced, and in what circumstances they gain meaning. This narrative analysis leads to a new, distinctly social conception of

TBI. My survivor-informants’ TBI narratives tend to follow a similar pattern, beginning by tethering physical injury to their lived experience such that the two form a seamless— if unstable—whole. While no two of these narratives are exactly alike, I identify one universal element the share: others always play an ineluctable role in them, even in their absence. They in part constitute survivors’ stories, which are in some way their stories, as

23 Narrative has a rich involvement in medical anthropological approaches of the last 40 years, though it reaches even farther into the discipline’s history. It has been used in analyses of clinical encounters (Kleinman 1988, Good and Good 1994, Garro and Mattingly 2002), therapeutic interactions (Riessman 1993, Mattingly 1998, Antelius 2007), psychological diagnosis and treatment (Kirmayer 2000), and even analyses of the lived experience with disability (Davis 2017). Fully outlining this history is not my intent in this chapter, as has already been more richly and competently done by Mattingly (1998), Garro and Mattingly (2000), and Riessman (1990, 1993) among others.

well. This diverse multiplicity of particular narratives ultimately serves to explain and justify the favorite saying of one of the policymakers and NGO staff I interviewed

(hereafter “policy-informants”): “If you’ve seen one TBI, you’ve seen one TBI.”

Constructing TBI Narratives

Terry is a middle-aged man who survived a severe TBI from a car crash in which his mother was killed as they were returning from a college visit in upstate New York. Despite some difficulties, he ultimately graduated and went on to start a successful career as a NCAA athletic coach. Today he lives with his girlfriend of several years in the first romantically co-habiting relationship of his life. He does not receive any accommodations or help with his lasting impairments and hopes that sharing his own story with other survivors will help them develop a more positive outlook on their own lives.

Sarah is slightly younger than Terry and also survived a severe TBI from a car accident during her first job after college. She moved around the country after her injury, earning a master’s degree in counseling and certification as a yoga instructor. Today she lives with her husband and has transitioned from working two jobs as counselor and yoga instructor to becoming a new mother. She continues to experience some difficulties with everyday tasks like remembering medical appointments and functioning on limited sleep as she cares for their newborn. Yet she gets help with these from her husband, an extensive network of Seattle-based cousins that she calls an “army”, and several rehab therapists in the city.

Eric is the same age as Sarah. Like the others, he sustained a severe TBI from a car accident as a young adult. Since his injury he has lived with significant impairments requiring near-constant assistance. Today he resides as the only younger person in an adult care facility outside of Seattle. They look after his daily needs, but he struggles socially and looks forward to days when his mother can take time off of work to visit or drive him to activities. He used to attend ActiveBrain, an activity center for adults who have had severe brain injuries, but this center recently closed due to funding concerns, leaving both him and his mother unsure of what he will be able to do for social interaction or enjoyment outside of his nursing home.

I constructed the above narratives to match as closely as I could those I often heard when speaking informally to TBI survivors in the city of Seattle. I present them because, as I discovered in the field, survivors rarely tell complete illness narratives that neatly codify their complete histories and accounts of how TBI affects their lives (cf.

Kleinman 1988, Riessman 1993). A few did deliver these during interviews specifically designed to elicit such narratives, but the settings and context of these interviews were hardly commonplace. Instead, much like the stories that are the primary data medical anthropologists collect and analyze (Garro and Mattingly 2000, Wikan 2000), most of the

“narratives” that I collected did not assume a traditional literary format of well-defined beginning, middle, and end (Ricouer 1984, Hyden and Antelius 2010). Rather, many of my survivor-informants gave their narratives in fits and starts, often in response to details or factors in the story that had not yet been spoken. These little “snippets of story” (Garro and Mattingly 2000) are akin to what Mattingly (1998) names “little narratives.” They are small and partial stories that therapists use to motivate their patients to complete their therapeutic exercises (see also Hyden and Antelius 2010). Survivors or others who tell of their injuries in this way may use the narratives for their own ends (e.g. Young 1988,

Duffy 2007), such as to acquire necessary or desired disability services and accommodations (e.g. Siebers 2004), to call on their social relations to aid or comfort them (Kendall 2013), or simply to explain actions or behaviors that they think others might misunderstand or misinterpret (e.g. Riessman 1990).

Several of my informants acknowledged wielding their narratives in this fashion especially when they suspected that others would not believe their needs for accommodation or understanding (e.g. Wendell 2017, Dumit 2006), but this did not always inspire the desired reaction in their listeners (e.g. Kirmayer 2000). Their interlocutors had sometimes accused survivors of trying to manipulate or trick them into granting unearned favors, as the disabled are often accused of doing (Siebers 2004)— though this was rarely (if ever) the survivor’s intent in my experience. They may have

also understood survivors’ narratives within a worldview that did not include the possibility of TBI as my survivor-informants experienced it. Simply, survivors’ personal histories and lives rarely neatly or directly lined up with their narratives and their narratives should be understood first as small tales told for specific but minor purposes, not as complete descriptions of their lives.

These little stories were often marred by my survivor-informants’ speech pathologies. Aphasia might limit the intelligibility of the messages they are trying to convey. Ataxic speech patterns might make their vocal production slurred or otherwise difficult to comprehend, especially by those not used to them. Even when survivors attempt to give full narrative accounts of their injuries and their lives, simple problems with attention and processing or working memory might mar the fluency of production of the narratives. The reasons vary by survivor, but they often result in the telling of single episodes that are not intelligibly connected to the larger story they intended to tell or in events that are only partially told and may not make sense in themselves. In order to be understood as parts of a fuller and more intelligible message, the larger narrative needs to first be reconstructed from multiple tellings of the narrative in which survivors and those closest to them engage (Hyden and Antelius 2010, e.g., Riessman 1990).

Terry, Sarah, and Eric’s stories, are each reconstructed to begin with the same type of event leading to the same biomedical diagnosis, severe TBI. They each also finish in their own fashion, defined by the particular details of the survivors’ ensuing lives.

Medical anthropologists and other social scientists have been productively analyzing the convergence of medical conditions and narrative for many years (e.g. Kleinman 1988,

Riessman 1990, Mattingly 1998).

In many ways, the stories that many of my survivor-informants tell are what these scholars refer to as “illness narratives.” These were famously defined by Kleinman as stories of “how the sick person and the members of the family or wider social networks perceive, live with, and respond to symptoms and disability (1988: 3).” My survivor- informants’ narratives contain stories of head injuries, their resulting disabilities, and how they and their loved ones responded to them and as such fit precisely within his definition. As such, the TBI contained in these narratives is always about survivors’ unique set of shifting impairments—what biomedicine speaks of as “disability”— in addition to those impairments’ effects on their lives—what older anthropology calls

“disability” (e.g., Kleinman 1988, Murphy 1985).

But my survivor-informants’ narratives also concern aspects of survivors’ lives that are not directly tied to their injuries, their impairments, or how they deal with them.

They are thus more than simple illness narratives. They not only describe each survivor’s personal experiences following their head injuries but everything in their lives that may or may not have been affected by those injuries. My survivor-informants’ narratives of

TBI are life narratives (Couser 2013, Gregg 2011) that are recursively linked back to the acronym in the process of narration, similar to processes linguistic anthropologists refer to as entextualization and contextualization (Silverstein and Urban 1996). They are thus also always about others’ perceptions and treatments of survivors’ impairments—what traditional Disability Studies calls “disability” (e.g. Charleton 1988, Shakespeare 2002), and the interaction of all of the above in specific physical and social contexts that may otherwise have nothing to do with TBI—what contemporary scholars discuss as the context of disability (e.g. Siebers 2017, Puar 2017).

Narratives of disabilities like TBI are thus not the same as and should not be analyzed as illness narratives (cf. Mattingly 1998), but rather are closer to narratives as understood by contemporary disability studies. Terry, who concluded his narrative with the words “I’m a TBI survivor”, does not consider himself sick, ill, or disabled, and tells a story designed to be a motivation for other survivors. Eric and Sarah each considered themselves disabled in some way, but like Terry would likely object to having their stories described as illness narratives. They are much closer to life histories than any centered on their particular bodily conditions. Anthropologists of disability likewise analyze how therapists do not help their disabled patients to heal, but rather to incorporate their impairments into their lives in a way that makes sense within the contexts of lives (Ingstad and Whyte 1995), sometimes engendering hope of a better life when further “recovery” is considered medically impossible (Antelius 2007). In the case of TBI, the aim is often to help survivors reframe their narratives in terms of their lasting impairments, “rehabituating” themselves to lives that account for and incorporate those impairments instead of attempting to deny or overcome them (Manderson 2011). The lives at the heart of their narratives are the concern, not the injury or the associated disability. Similarly none of the three little stories I presented above are specifically about TBI, they are about particular lives in which TBI is one of many important factors.

Because narrative recounting is always intersubjective, others necessarily play a role in them. Frank (2000) identifies how the destabilizing effects of illness on the self can lead to a change in the relationship between self and others, a change which is both reflected and responded to in narrative. Riessman (2000) shows how some Indian women who cannot bear children refuse to accept the “normative social biography” that

stigmatizes them and constructs their condition as a personal flaw (113). They instead establish their own identities through new narratives that are based on small acts

“everyday resistance” to the dominant order (130). In the case of survivors I encountered in Seattle, this reframing of the self also accompanies the redefinition of social relationships. Many of my survivor-informants built new connections and social networks after their injuries while rejecting old ones that no longer respected or positively influenced their lives (e.g. Rapp and Ginsburg 2001). Terry for example developed a completely new group of friends after his injury, choosing to refocus his life and sense of self around pursuing a successful coaching instead of athletic career. Sarah admits to receiving help often on small tasks when she is overwhelmed by migraine headaches or cognitive fatigue and has both a husband and an “army of cousins” who live nearby when she needs someone to look after her newborn son. Eric has few social connections but has learned to live with only his immediate family for meaningful interaction, trying to find activities outside of the assisted living facility where he is the only resident under the age of 60.

The TBI that emerges from the intensely particular stories that I collected and observations and interviews I conducted, the concept that travels and largely informs public understanding of TBI, is only truly understandable in relation to its constitutive narratives. In his analysis of the Venezuelan cholera epidemic, Briggs and Mantini-

Briggs (2003) likewise show how small narratives, bits of gossip, and other rumors about the epidemic directly inform public understanding of the disease along with its sources, treatment, and appropriate responses. Like in the Venezuelan cholera epidemic, the TBI stories I collected soon take on a life of their own, influencing each other and ultimately

serving as a public source of knowledge that is removed and at times directly in conflict with biomedical accounts. As similar stories spread in social circles about individual survivors’ own injuries, TBI comes to mean in these circles what survivors and those around them say about themselves, including such elements of their personal lives as their jobs, relationships, or daily routines in addition to their injuries and impairments.

TBI as narrative particularity cannot be abstracted away from the lives and stories that give it birth. Every time it is invoked, it must be fleshed out with new lives and new experiences, leaving it subtly changed and only ever fully applicable to the new narrative.

The concept of TBI as narrative particularity is thus never irrevocably attached to the particularities of given injuries—nor is it absolutely free of them. Ultimately, TBI narrative reflects and draws on the particularity of the injury and its consequences as lived, tethering general concept to specific narrative such that the concept means what happens in each of them, no matter how contrasting they may be. TBI is thus never not meant to refer to the original injury but is now always also the particular details of survivors’ lives, lives lived with and constituted by others who come to share in the construction and delivery of their narratives.

Tethering TBI

The content of my survivor-informants’ narratives may have been particular, but most followed the same pattern—though as with all things related to TBI, there were exceptions. Most begin with a description of the concrete events that led to their injuries and the biomedical diagnoses they received. From this point, they usually continue with tales of their clinical experiences in inpatient and outpatient rehabilitation. These

episodes lay out the sequelae they experienced, how they first learned to connect their injuries to those sequelae, and their ensuing “recoveries”—periods when their impairments resolved or healed that can in some cases be lifelong (e.g. Lorenz 2010,

Krefting 1987). Their stories then run in particular directions that fit the contours of the survivor’s own experience. There is barely anything continuing to link their experiences with TBI for those who may have limited prior knowledge of the injury and its affects.

How do survivors establish their life narratives as TBI narratives, especially when there is little observable evidence linking the two?

My survivor-informants’ narratives accomplish this largely through structure.

Before TBI can effectively be used to refer to the particular brain, body, and life that it impacts, they all must be linked together. I use the nautical and computing concept of

“tethering,” one ideally suited for a city as celebrated for its shipping and high-tech industries as Seattle, to explain this. For the former, a ship must be first tied or tethered to a one of the city’s famous docks before it can then be filled with fuel, passengers, and other necessary materials. The tether can then be released, and the ship can embark on its journey. For the latter, a computing device must be digitally linked or tethered to another before it can transfer the desired software or files. It can then be detached and used in whatever fashion the user desires. Likewise, the telling of any given TBI narrative, no matter how “little” or episodic that narrative is, must be secured to the formerly empty concept of a head injury before it can be filled with the particular details that constitute the survivor’s narrative of injury, resulting impairments, and life. The narrative can become untethered from the strict confines of biomedical diagnosis and take whatever direction or serve whatever purpose is required in the telling.

Ships and devices, if made well, can relatively easily become unmoored or unlinked, drifting or being guided to another location and becoming secured there. Once re-tethered they can again function as normal though they do so with different cargo and programs. TBI similarly moves between narrative tellings such that it can hold one meaning when connected to one survivor’s story and another when linked to another’s.

Moreover, as with boats and computers devices, the concept of TBI can be moored to multiple docks or connected to multiple devices simultaneously. Yet the former risk becoming so full of cargo or information that they sink or fail. Similarly TBI can become so full of unique stories that it cannot accept new ones without those stories contradicting each other. The concept thus risks losing the validity survivors’ stories gain through the connection, to which I will return later in the chapter.

Finally, as in the nautical-technological image that I am invoking, this tethering is both deliberate and guided on the one hand and temporary and unstable on the other.

Ships and computer programs cannot exist as such without human intervention and agency. They can be stolen, hijacked, damaged beyond repair, and sunk. They require constant vigilance and upkeep to remain in working order, which can only be completed if they are retethered to a secure source. Likewise, my survivor-informants’ narratives must be maintained, reinforced and re-“tethered” such that they retain their descriptive and explanatory power without losing connection to their subject matter, TBI.

Cindy, whose head injury was diagnosed as moderate, has some memory of the events of her injury and in a few words perfectly demonstrates this structure. She first mentions the 2 acres on which she and her husband live, setting the scene of her injury. In the next sentence, she describes how,

I was half asleep when (my dog) asked to go out at 1:30 in the morning. So I snuck out of bed while my husband was asleep, and I took the dog out, but I put him on an extension leash. As soon as I opened the door there was a wild animal right in front of the door on the driveway. And my dog bolted after him. The leash fully extended out and I flew out the door following the dog. And flew over the steps and landed on my forehead. And um, ended up at the hospital with 200 stitches in my forehead.

Cindy’s narrative begins by locating her injury in a quotidian and mundane context: at home with her husband and two dogs. It then briefly relates the events of her injury. Her narrative secures the tether with a brief reference to the hospital and a standard medical response to any injury that breaks the skin: “stitches.” She mentioned that she has told this story numerous times before, especially as an explanation for her flagging performance as the founder and head of a high-powered startup. Yet she also told me that the story occasionally arouses disbelief or annoyance from her audience. The weakness of the initial tether, relying only on the words “forehead,” “hospital,” and “stitches,” explains some of the difficulty she told me she encounters when telling her story to others, and possibly why she never received accommodations in her work and thus no longer works full time.

Those who survived more severe injuries, like the three stories with which I opened the chapter, rarely remember the specific events of their injuries. They only know of these because others have told them about them, and thus their narrative tethers are often cursory or rely on elements outside of the text of the narrative itself. Savannah for example answered my initial prompt by immediately turning to her mother who she had insisted on being present for the interview and asking tenuously, “Camping?” Her mother, rather than answer for her daughter, prodded her with the type of location of her injury: “Lake…” to which she confidently gave the name of the lake. After this she

launched into her narrative proper, though it was one of the most cursory that I collected, as was its tether:

Aaand um some—a few of us—went hiking up this cliff. And then we were waving down, and I tumbled off that cliff. Aaand I wasn’t conscious when I was on the ground, so I’m glad they called 911 to save me. Aaand then, the medics came for me there. …and, cured me.

The hesitancy of this brief and relatively empty story clearly indicates that she does not remember any of it herself, as she confided to me a few seconds later. Like Cindy,

Savannah begins her narrative by describing the relatively ordinary context of her injury: camping at one of the hundreds of lakes in the mountains nearby Seattle. But the description is hardly evocative, and the tether is secured in her narrative only with ineffable comments about being unconscious and clinicians “curing” her—which even she would admit they clearly could not do. It instead relies on the fact that we had met at various events for TBI survivors in the city in the past. Her impaired mobility, slow and slightly impaired speech, poor memory further reinforced the tether such that it was clear that anything she said or did was affected by her injury.

After describing the contexts and events of their injuries, survivors narratives then adopt the authoritative voice of biomedicine, securing their narratives to the acronym with tales of their formal diagnoses and their experiences in the hospital. They do so through long episodes containing multiple events, little more than a few words, or anything in between. These clinical episodes always involve practitioner-patient interactions, such that several of my survivor-informants mentioned their doctors, nurses, and various therapists by name. Often, these were the only names that were mentioned in their narratives. One informant paused each time she struggled to remember her clinicians’ names, pausing her narration until she could (I assume) correctly recite them.

Depending on the context of narration and the willingness of interlocutors to accept survivors’ recounting of events, the tether can be strong and secure or weak and questionable. Whatever its size or strength, the tether serves to frame “TBI” as a natural condition. Within this frame, the details of their lives after the injury are presented as its inevitable result and basing their stories’ legitimacy on their connection to biomedical science.

Many of my survivor-informants’ narratives dwell in medical settings for longer.

They firmly establish their tether to the legitimacy of the biomedicine, using it to bolster the validity of constructions of TBI that lay outside it. Olivia, for example, is a middle- aged woman with a wiry athletic build. After describing the bicycle accident that left her in a coma, she describes how:

For seven months I was in uh put in the ICU and, um, you know a hospital and then a secondary hospital, and…I I forget so much of it that it’s—a lot of it is just, blankness. And, with, um, sort you know brief memories of certain events, like, having a brace put on my leg. That was traumatizing. Or, having to use um a walker to ambulate. Or just certain events that were traumatic is all I can remember.

Because Olivia worked as a nurse before her injury and thus already knew many of the medical terms and procedures used to treat her, but she still had not understood how these were connected to TBI until she survived one. After mistakenly referring to her physiatrist as a neuropsychologist, she discusses how the woman “talked to me about what it means to have a TBI and what I should do. She recommended I talk to other people with the same injury and to seek counseling.” Olivia’s narrative almost ironically uses the voice of biomedicine to locate knowledge of TBI outside the hospital, with other survivors and counselors. The account distances Olivia’s current life from biomedicine

and the expertise she possessed before her own injury, when she was unaware of TBI as anything more than a biomedical designation.

Others have no recollection of their time in the hospital and include these episodes only when it helps tether the injury to their lives. Thomas is a young man with a cool and nonchalant attitude whose only visible impairment is in his mobility, as he walks with a leg-brace that he only puts on when he needs to be on his feet for an extended period of time. He wears the brace as a result of falling 30 feet onto the concrete pavement when he and his best friend were climbing on structures in a city park late one night. His narrative begins with the fall, securing the tether of TBI to his life with an almost disembodied tone of “a story of some other kid that fell.” He does not even remember the first time he learned about the injury and its relation to his experiences, and his narrative contains few episodes in the hospital. Like Savannah and Olivia, Thomas’s narrative contains few details to bolster its tether to the injury, and he instead indicates the leg brace that he wears to emphasize the link. Once this connection between injury and lived experience is established, his narrative largely skips clinical and other stories to pursue its own unique direction that is based on the particular details of Thomas’s life.

Further strengthening the tether between the injury and their lives, most survivors’ narratives follow with stories of what they term their “recoveries.”24 This period sees them deal for the first time with their impairments in settings outside the rehabilitative world of the clinic and the rehab ward. It is at this time that TBI comes to mean

24 These begin immediately after they leave inpatient rehab care, which usually comprises the first year after their release from inpatient rehabilitation or emergency departments, is extensively studied and commented on by physiatry, neuroscience, the various therapeutic and rehabilitative disciplines, social work, and other specialists. While I was in the field, the UWTBIMS ran one arm of a nationwide study that sought to examine this period in survivors’ lives. Details about the study, which is still ongoing, can be found at https://www.pcori.org/research-results/2017/comparing-strategies-help-people-traumatic-brain- injury-continue-recoverings.

survivors’ lives, as TBI-related impairments come to serve as impediments to the lives and abilities that they had prior to their injuries. The acronym implies more than just the injury and the broad cluster of diverse impairments that are glossed under the same name.

“TBI” now also includes to the lived experiences of the individual whose brain was physically damaged. Importantly, as I will argue later on, this includes their interactions and relationships with others. Yet TBI is still tethered to the injury such that these diverse narratives allow for the seemingly nonsensical phrase “with TBI” to be used by all those who speak of survivors. It also allows for the phrase to comprise such distinct lives and experiences as narrated by my survivor-informants such that what the acronym means for one survivor can contradict another’s experience without troubling the overall concept.

Once their narratives secure their respective tethers, both Cindy and Savannah’s stories proceeded to claim their own unique lived experience as TBI, variously referring to it as “TBI,” “my TBI,” or “my life with TBI.” Cindy’s inability to work in her old job and Savannah’s reasons for living with her parents in her late 20s are each constructed as the legitimate results of their respective injuries, despite the fact that their interlocutors may not have knowledge of the validity of these claims. Olivia’s narrative betrays a clear reluctance to accept the reality of her injury. It includes multiple episodes of her trying to trying and failing to restart her former career and athletic activities, but these are never clearly located in relation to her injury. For example, she speaks of weekly training for athletic competitions such as bicycle races and triathlons. But she did not mention that she had only recently signed up for her first competition, which would happen several months after I left the field, until I asked. Athletic training was part of her narrative’s

injury-hospital-recovery structure but was never clearly laid out as such because she herself was reluctant to admit that she could not pursue her favorite activities.

A few of my survivor-informants’ narrative tethers did not follow this neat injury- clinic-recovery structure. Faye for example is a Native American woman in her 60s with straight charcoal hair that flows over her shoulder blades. She keeps it long both as a sign of her ethnicity and to cover a 2-inch long depression in her skull just behind her right temple. Faye survived a severe head injury when she fell down the stairs while drinking one night. Yet instead of starting with this event, using her injury to tether her story to

TBI, her narrative begins by delving into her complex life history, exploring themes that she herself would later identify as salient in her life “with TBI”:

My life with TBI started really really young. My mom died before I went to kindergarten. And I started drinking at eight years old. By the time I was 10, I carried a pint of liquor and a pack of cigarettes in my backpack. I learned how to get the liquor very early by befriending my friends’ older brothers, and then their fathers when I realized I could get a ride home, in ways little girls shouldn’t do. And I think that’s when my brain injury started. I suffered along with a stepmother that was horrible who abused me and two older brothers who went to Vietnam and brought all their sadistic sexual tricks home on me. For the next ten years (after the war ended), they were my caretakers as my parents travelled.

In Faye’s account, it is not the injury itself that emerges as the “start” of her life “with

TBI” but rather childhood experiences and behaviors. Her narrative thus does not begin with her falling down the basement stairs or with her subsequent medical treatment but with earlier emotional traumas that foreshadow her physical trauma. Her tether is thematic instead of literal, as she identifies “TBI” with adverse and emotionally traumatic experiences in her early life. She does later explain biomedical details of her bodily injury in gory detail, as she pushes aside her hair to reveal the 2-inches long “dent in my

forehead.” But in her narrative, this is less central to the story of “(her) TBI” than her troubled upbringing.

Of course, like in the nautical-technological analogy, tethering TBI to a given narrative is not always successful or strong enough to last for long. My survivor- informants, especially those with fewer or no visible impairments, would often include stories of not being believed when they would tell their stories. Kirmayer argues that

“broken narratives” are those in which co-construction of a narrative fails, resulting in tension between narrator and interlocutor, potential misdiagnosis, and the “play of cross purposes (that) tears apart the fragile world of shared experience (2000: 169).”25 Though

Kirmayer’s patients share narratives of mental illnesses, TBI narratives function similarly in that they must first establish some form of legitimate link between biomedical condition such as a psychiatric diagnosis, and invisible symptoms. Dumit (2006) puts a twist on the same conflict, as those who experience Chronic Fatigue Syndrome (CFS) and

Multiple Chemical Sensitivity (MCS) wield facts in their struggles for recognition and legitimacy. TBI is not the same as CFS and MCS, as it has long been recognized, studied, and treated by biomedical science, but like them TBI is largely unknown or misunderstood by most members of the public. Survivors’ narratives seek to counter any potential skepticism, as they tether the facts of their injuries to their current lives.

Failed narrative transmissions are common in Seattle, even among survivors.

When they gather for community events, as discussed in chapter six, survivors sometimes interrupt each other, calling out what they see as others’ exaggerations or false claims.

25 As mentioned in the chapter’s introduction, several social scientists have noted this important concept, including Kleinman (1988), and Mattingly (1998), Riessman (1993). Kirmayer’s concept seems the most appropriate to TBI, however.

Tensions occasionally reach a boiling point that can have much wider effects. Faye described to me in detail one such incident. One of my survivor-informants named

Arcadia, a woman in her 40s from New York with a direct and occasionally aggressive manner of speaking, got into an argument with others about how she had been dominating their conversation. There was nothing out of the ordinary in this, as survivors often get lost in their own narratives in casual conversations with each other, and Arcadia had been speaking about how her own father had sent her a message saying that he would never speak to her again. But in this incident, others did not respect that Arcadia’s long story was related to an injury as she insisted. They instead criticized her for selfishly taking up their time. An argument broke out, and Arcadia left the group in such a furor that Faye called a local brain injury NGO to inform them of the incident and ask what she should do. Staff at the NGO then called the authorities and asked them to check on

Arcadia at her apartment, as it was the holiday season and Arcadia, like many survivors, lives along and had no one to care for her. Arcadia then responded with a flurry of furious text messages, spread over an hour and a half, that someone had “set the cops” on her.

Reflecting on these events, Faye said, “I would have been grateful that someone cared.

But not (her). Remember, she isn’t suffering from TBI.” In other words, despite Arcadia that she had suffered a moderate head injury a few years earlier, Faye did not accept that her complaints were about TBI. In this case, the tether had come loose, and Faye saw the other woman’s story as falling within the domain of what she called “mental health” instead of TBI.

As this last example makes clear, the TBI that arises from survivors’ narrative tellings, what I name as narrative particularity, is often precariously tethered to individual

lives and narratives. The tether must be continuously monitored and reattached if necessary to maintain the link between the survivor’s lives and the acronym. Thus through narrative an injury becomes something more than just head injury, sequelae, and impairments. It emerges as a distinct entity that is always tethered to the idiosyncratic and particular narratives of individual survivors’ lives that must be actively secured and re- secured for its legitimacy.

The Particularity of TBI Narrative

Following the injury-hospital-recovery structure that tethers TBI to their narratives, survivors’ narratives begin to flesh out the acronym with what many of them referred to as “my TBI”: the particular details of their lives.26 From these details I developed the concept of narrative particularity. Each narrative was framed and in several cases defined by broad social and structural factors in survivors’ lives, which when added to the diverse range of physical and cognitive impairments that result from survivors’ head injuries, heightens the complexity and diversity of those experiences such that no single narrative was commensurate with any other. Considering survivor’s stories less as complete narratives and more as a group of partial tales in which the narrator aims to connect thematic elements of their own lives with the acronym, this section illustrates three salient themes that each point to the intrinsically social nature of each of the diverse constructions of TBI.

26 After conducting and then coding and re-coding 30 of these narratives, I was left with 411 distinct codes, which was still larger than feasible for a normal qualitative analysis (Guest et al 2006). I resolved these down to 20 broad themes, but they had by this time become so general as to be too vague to draw serious conclusions.

The first theme many survivors reported soon after establishing their narrative tether has to do with how they adjusted themselves and their lives to their lasting impairments. TBI narratives share this theme with other narratives of chronic illnesses, in which the sick or impaired refigure their lives in narrative format to account for changed embodiments (e.g. Good and Good 1994). For example, Manderson (2011) describes how she herself had to learn to live with a condition that left her unable to fully use her left hand. She used several splints to assist her, some of which were more “edgy” and some purely functional, but all of which helped her define her self-presentation.

Manderson kept them around even when she no longer used them as reminders of how she rehabituated herself to her new capacities. My survivor-informants’ narratives often follow a similar path, as they speak of coming to terms with a variety of bodily impairments.

My key informant, a stroke survivor named Paul who leads several of Seattle’s support groups for brain injury survivors of all types, came up with his own term for this process. Paul frequently exhorts his groups to “move forward” as opposed to dwelling on their impairments. Several of them used the same phrase when describing their lives during their interviews. Jenny for example, is a group member who received a generous settlement for her severe injury that left her with . Her narrative presented her “TBI” as a process of continuous if slow change and improvement in her condition as she passed through stages of recovery, moving out of her parents’ house, furnishing her apartment, and volunteering with local disability NGOs in the city, and finally beginning paid employment soon after I met with her. She does not associate or identify with many other

TBI survivors in the city but speaks with Paul regularly on the phone and in coffee shops

and is thus well acquainted with his phrase. Her life “with TBI” is about attaining small goals that she sets for herself, by herself, and thus “moving forward.”

Aaron, a young man with nothing in his visage or mannerism that indicates his severe injury from being hit by a train, is not affiliated with Paul or his groups. He keeps his prosthetic arm hidden under long-sleeve shirts and jackets, a masking of his physical impairments which is easy to maintain in a northern city on the sea like Seattle. His narrative is centered on his romantic relationships with women. For each of these relationships, he describes how he and his girlfriends would begin to “move” towards a more formal partnership, ultimately ending in marriages. All of these relationships failed, however, for reasons that he insisted were never related to his injury but were instead related to how his girlfriends were “not ready to move forward” with their relationship.

The story of his progression of girlfriends is, in his own words, the story of his life TBI, one of continuous progress “moving forward” to the future he desired.

For other survivors, rehabituation was not a process of “moving forward” but a sudden stop in momentum. Several of my survivor-informants spoke of how they attempted to relearn how to drive to develop new lives, but ultimately had to give up their licenses when they were unable to pass mandatory driving tests. Their reasons for doing so were usually because of other impairments like cognitive stamina, double vision, and others. As Zoe said:

I drove 3 months in college, with a learner’s permit. And I got into 3 accidents. So my parents said, “Driving’s not for you.” And my coordination and eyesight and, you know I can’t turn my head real fast and look everywhere. And, um so, my parents must have been in, you know “We’ve just gotten you through this accident and you’re getting into more accidents!” You know and—but I didn’t get hurt real bad in any of ‘em. But they said, “Driving’s not for you.”

Zoe eventually became accustomed to relying on her parents and later her spouse for transportation, but her narrative does not present this process, instead focusing only on how TBI meant that she could not drive legally or safely.

Olivia likewise does not consider her “TBI” to be something motivating her to

“move forward,” but as something that stops her from pursuing her chosen career and has to be circumvented. In her narrative Olivia clearly wants and is prepared to return to her pre-injury employment as a nurse. Yet her physiatrist—the same clinician her narrative demoted from biomedical clinician to neuropsychologist— “put a restriction on my

(nursing) license.” The clinician testified against her when Olivia attempted to renew her

U.S. nursing visa. She plays the role of principle villains in Olivia’s story, standing in the way of her efforts to resume her career. Yet in the narrative, it is clearly TBI, not the doctor, who is responsible for this. Olivia even admitted as much, while paradoxically claiming that she is ready to return to work.

Another common phrase for the same process of rehabituation often included in my survivor-informants’ narratives, is one borrowed directly from rehabilitative and popular literature about head injuries: “new normal.” For some survivors, the term is a useful way to integrate the inescapable reality of their physical impairments into their lives. As Cindy said,

To me, the hardest of things was to get to realize there’s an old me and a new me. Because you have glimpses of the old person in there and seeing that old person gets you in trouble. Because that old person commits to a lot of things. You have to learn not to make commitments with that person, not to make arrangements or take on projects with that old person. Because the new person can’t follow through on that.

The new Cindy, who lives with the uncertainty and instability brought about by her impairments, “can’t follow through” on the same tasks that the old Cindy completed.

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Consequently, the “old person” threatens and must be held at bay by the “new person.”

These distinct persons are creations of the narrative as a way to explain or justify why my survivor-informant feels unable to complete the projects that she used to.

Olivia also speaks of a “new normal”, though she is more ambivalent about the term:

It’s my “New Normal.” I had to change my outlook—it’s a new way of life for me. I had to—I couldn’t just heal in a few months and get back to (her former activities). I had to— and I still am working on this new way of life. Um, this—I have a new brain or something. There was a lot of denial for this disability that I have. I don’t like to say that I have a disability just because I’m still in that denial phase. But I really do. I, I can’t…fake it.

Her discomfort with the term is clearly visible in the way she struggles to describe the role it plays in her story. For Olivia a “new normal” is something she still has yet to come to terms with. It describes the state of struggle and ambivalence, a state that echoes throughout her story.

Faye, however, despises the term. She contrasts it with her narrative, claiming:

I needed to show everybody that I wasn’t worthless and I had meaning and I wasn’t self- serving and I was gonna do what’s right. Because I’m still me. I’m still the person I was born, who was loving and kind and more compassionate than Jesus will know. I am the one who will hold your hand and give you my shirt and be your friend forever. I’m still me. I don’t think there’s a new normal. I disagree with that. I have no new normal. I keep changing every day to be the better person that I can be every day with this brain injury.

In Faye’s narrative, which begins by stating how her “TBI” started when she was a young girl, there is no “static” set of impairments, experiences, or lives that can characterize her narrative. Her story is always changing, always developing, and resists being characterized in a single way. The narrative asserts her own agency to adapt to her impairments and effect change in her life.

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These diverse approaches to rehabituation, though always characterized by particular details of each of my survivor-informants’ lives, all assign a critically important role to significant others, even when those others only appear implicitly. In

Aaron, Zoe, and Faye’s stories, others are explicitly mentioned as those with whom they struggle in their rehabituation. In Olivia, Cindy, and Jenny’s narratives, others may be present but are not explicitly mentioned as drivers of their rehabituation; they are those from whom Olivia cannot hide her impairments, those who might expect the “old” and not then “new” Cindy, those Jenny moves away from as she learns to become independent.

Another key theme in my survivor-informants’ narratives is their personal responses to their impairments and others’ treatments of their impairments. Medical anthropology has long noted that the ill and disabled, and those around them, respond to their sicknesses and impairments with anger and blame. Some even claim that, “Being sick entails crises of blame and responsibility (as) someone must be responsible for misfortune.” (Freund et al 2003) Not all survivors follow this rule, but many are no exception. Terry, himself a successful NCAA athletic coach with a remarkably successful life with which he is very happy, speaks of how he went through an “anger phase” in his recovery that continues to motivate him today. In one episode, his sister was wheeling him through the hallway at his rehab center one day but suddenly stopped. She released the wheelchair and refused to push him again until he pushed himself for the next 5 feet.

Terry reports that he, “cursed her out (and) said a lot of stuff that I probably shouldn’t have,” reducing her to tears behind him. His narrative specifically cites this and other actions from his friends and family members as directly leading to the strength and

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rapidity of his rehabilitation, saying “I mean, those are the people and moments that got me to where I am.”

Some of my survivor-informants’ narratives were infused with a resentful anger as they felt misunderstood and mistreated. Dave, a middle-aged musician and astrologist, sustained a severe TBI from a car accident that ended his earlier career and has today causes him severe sleep disturbances. His narrative does not list these as grievances, however, and speaks only of how Dave’s clinicians misunderstand or ignore the ways that his impairments affect him. While the story contains gratitude for the emergency medical personnel who pulled his comatose body from his car wreck years earlier, this gratitude does not extend to later clinicians who have consistently refused to listen to him regarding impairments. Dave concluded his narrative with a special message for his doctors: “You don’t know everything. Fuck you guys!” He immediately apologized for this vitriol but did not retract it, leaving his narrative with a negative impression of rehabilitation. His narrative of “his TBI” is thus one of conflict and the resulting anger.

A related though less frequent theme in survivor-informants’ narratives is that of gratitude. In Eric’s case, he only briefly mentioned being lucky to survive his car accident, and instead expresses gratitude for the help he has been given. In delivering his narrative and also in of my subsequent interactions with him, his stories were peppered with the words “thank you”, spoken in his characteristic halting and gravelly voice. Eric always expresses gratitude for help with mundane activities, even when he has not asked for it and does not want it, such as when he struggles but succeeds to stand unaided, walk with a cane or walker, remember medical and other appointments, and even follow simple conversations. He expresses the sentiment even when others, such as a fellow

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survivor and anthropologist have done nothing to deserve it other than listen to his story.

He even finished his narrative presentation with the words, “thank you for listening to my story.”

Another of my informants, Ben, is a former preschool teacher and children’s musician with curly hair surrounding warm and caring eyes. He focused his narrative around a unique phrase that exemplifies his life: “bonus time.” Ben presents this theme immediate after tethering his story:

So I spent the two years (after my injury and time in the hospital) working on myself and along the way I met somebody who had said he had gone through something tragic where he almost didn’t make it. And he’s like, “So it sounds like you coulda died that day huh?” I’m like “Yeah I coulda died that day.” And he said, “And the first responders said you shoulda died huh?” And I was like, “Yeah they did.” And he’s like “You, my friend, are living in bonus time.” I’m like “Bonus time what’s that?” And he’s like “From the day of your accident until the rest of your life when you do eventually die, every day, every hour, every minute is bonus time. It’s time that you probably shouldn’t have got but you got it! Bonus. Do something good with it.” And it changed my life.

In this episode from his narrative, the concept comes in the form of a gift from the survivor of an un-mentioned health crisis. Ben adopts it in his life and uses it, like Terry, to motivate his return to his prior profession of teaching. He also references it while explaining his vegan diet and proselytizing on numerous social and political issues, all of which he views through the lens of his TBI and the “bonus time” surviving it has given him. Ben’s narrative paints his TBI as the primary motivation for pursuing what he sees as good and healthy habits. Significantly, these good habits are not limited to his own life but for the lives of those around him, as well. Later in the narrative, when describing his wife who supported him during his recovery, he again references “bonus time” as her gift to him, even though she did not come up with the phrase. His life and narrative are

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defined by bonus time, and the partner with whom he shares that life is cited in the narrative as one of its primary sources.

These elements of survivors narratives are not directly related to their head injuries, sequela, or impairments. They are personal and emotional responses to them.

They are thus not part of TBI as constructed by physiatrists or rehab therapists.

Moreover, every single one of them occurs in and is affected by social relations. Terry’s and Ben’s are the result of specific interactions in the early days of what their narratives termed their “recoveries” that reverberated throughout their lives. Dave’s and Eric’s reactions were both directed at and for specific individuals. They all serve as central elements of the narratives which explicitly involve others for their emotional and meaningful impact.

A final related theme that appears throughout most of my survivor-informants’ narratives is their continued need for assistance. This theme is directly related to the use for which survivors talk about their TBIs, discussed above as “little narratives” that justify their legitimate rights to certain accommodations or treatments. The most common impairment with which they my survivor-informants need help involves memory problems. In rehabilitative and biomedical literature, these are held as different neuro- cognitive functions—specifically, long-term memory, executive functioning, short-term memory, and aphasia (Moore et al 2012). Yet in survivor narrative they are glossed simply as “memory” and are tied their lived experiences after their head injuries. They would speak of frequently forgetting important appointments with rehab therapists, social security officials, and the lawyers who were litigating their cases and needing reminders for them. In their narratives, they rely on family members, caregivers, and friends to

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remind them of these appointments. Some spoke of using sticky notes as personal reminders, attaching them to desks, countertops, and refrigerators. A few complained that these reminders would pile up as they were unable to remember the subject of each note and would leave notes reminding them of other notes. Despite the prevalence of memory issues among survivors’ sequelae, my survivor-informants narratives rarely spoke of it the same way. As such, even though “memory” was one of the most frequent impairments around which survivor’s narratives centered, what it meant depended on the particular circumstances in which these memory issues appeared in survivors’ narratives.

Perhaps the most useful term my survivor-informants used in their narratives to describe their continue needs for assistance was coined by Frank, a lanky blond child of missionaries who worked in the tech sector. Frank survived a severe head injury when he was struck by a car while standing on the side of the road during a business trip in

France. His chief complaint is not of the injury of its sequelae, however, but of what he calls “little things”, ordinary matters like sticking to a daily schedule, remembering to pay rent, and keeping his house clean. He described them as:

These tons of miscellaneous things that other people kept dismissing like it was no big deal. Like, I had no memory of my kids after my brain injury. That’s a big deal: two kids, I don’t remember either one of them. So I was having to learn about my children again, you know, my whole life again. And then I have to deal with all this little crap on the side. Like everybody’s telling me: “Don’t worry about it.”

But clearly, he did. Worry about the “little things” kept him from attending to the “big deals” in life. After several years of attempting and failing to handle these large and small matters himself in another city, return to work, and keep his marriage and family together, Frank gave up and moved with his mother and youngest son to a new home outside Seattle, when I first met him. His mother helps him remember to turn off the

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stove, give his son a ride when Frank is too fatigued to drive (which is often), and deal with a vast and confusing system of biomedical and rehabilitative care involving neurologists, rehab doctors, therapists, and affiliated medical personnel. Frank’s story ended up being one of the most optimistic of my fieldwork. With his mother’s help he was able to manage a new house, care for his son, and get engaged just as I was leaving the field. Yet he still ended his narrative thusly:

After brain injury, we have a lot stuff on our plate. The current medical community is so good at the more immediate care part. Because that is necessary. That is very good. But, um, they sort of missed the transition. And I think we have a lot of people getting run over on the sidelines. That’s what happened to me.

Intriguingly, Frank’s narrative portrays “getting run over on the sidelines” as something outside the events of his head injury or rehab—despite his actually having been “run over” on the side of the road. His words instead locate his TBI-related problems in day- to-day matters that have no necessary connection with physical head injury. Frank’s narrative also proposes these as problems faced by more than just him, attempting to propose a universal element of TBI while still acknowledging the worth of the biomedical perspective that saved his life.

Other needs for assistance were more idiosyncratic. Olivia’s narrative, for example, focused on her problems “orienteering”, by which she meant 'finding her way'.

As she said,

I really have trouble with orienteering. So I I picked up these devices, cuz I lost my car a few times. A few times. It’s awful! I, I picked up some of these apps that you stick on your, you know like, like a backpack, if you put it like—I haven’t actually used it yet. But I I stuck one in the car. Cuz I lost my car a couple of times, it’s awful. Like I, I’ll do it myself but sometimes it’s it’s really hard, um. I lost the car a couple of times.

TBI, in Olivia’s narrative, justifies her need for and use of Tiles, small devices mentioned in the episode above as “apps,” that can be attached to various items that can then be

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tracked via a smartphone app. Olivia later told me how she began using the devices after she again lost her car while serving as an at-home assistant. She was unable to locate the vehicle to travel to a client’s apartment, frantically and fruitlessly calling her boss and her husband to locate it. Finally, after several hours, Olivia called a friend. The friend helped her find the car only a few city blocks from where she had been searching for it, but by that time another staff member had been sent to take care of Olivia’s client.

For others, their needs for assistance are presented in their narratives as more domestic. Thomas for example was unable to work support himself on his own after his injury, as he required multiple surgeries to address his mangled leg and extensive rehab for his head injury. He first moved back in with his mother for a few months after the hospital and then lived with his grandparents when his mother had to move out of Seattle for work. Yet his grandparents asked him to move out after only a few weeks, complaining that his mother “shouldn’t put this on us,” forcing Thomas to move with his brother, Ted. But Ted was also a young adult and ultimately unable to manage starting a life and career in the city while helping his younger brother struggle with significant cognitive and mobility impairments. As a result, Thomas back in with his mother in

Texas, where he did not know anyone, and struggled to develop a life living in a new state with his mother as a 20-year old. His narrative paints this move in a positive light, though he also expressed relief at moving back to Seattle after only one year. Once

“home”, he reconnected with a few of his pre-injury friends, though he now spends time with them much less frequently than they do with each other. Thomas’s narrative was thus characterized by nearly constant movement, mandated by the significant others in

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his life. Though he was careful not to paint any of these developments in a negative light, the narrative

For some, finding assistance or help in their lives is a constant source of tension their narrative. Charles posited how “the only thing good” to come out of his injury was his renewed relationship with his mother, with whom he did not live and thus had not been speaking before his injury. Owing to difficulties with stamina, attention, and emotional control issues that he claims are TBI-related, Charles was unable to hold a job after his injury and came to rely on this relationship for both emotional and financial support. Mention of relationship led immediately into the tale of how hard her death was on in him a few months earlier and led him into a self-destructive spiral of depression, isolation, alcoholism, and suicidal ideation. Charles’ narrative reinforces this by stating:

“I’m so fortunate to have my two cats because they’re the only reasons I’m still alive.”

Of course, the cats serve to reinforce the fact that others are not available to give Charles the help that he needs in his daily life. Charles’ narrative thus portrays TBI as something that requires the help and support of others, support without which he slides precariously close to suicide.

Survivors’ reliance on others in the years after their injuries, at least as related in their narratives, varies from case to case. There is no single way that survivors come to rely on others, just as there is no single way that they react or rehabituate themselves to their impairments. From a thematic standpoint, the acronym that these narratives contain is dependent on the particular details of each survivors’ life for its content. TBI, at least as presented in survivors’ own words, only becomes relevant when it is attached to their own stories, which are themselves the product of a vast assortment of other factors.

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Beyond the Injured Body

As suggested earlier, these narrative constructions of TBI exemplify more than particularity. They are also eminently social, focusing on certain significant others, especially family members, caregivers, and legal guardians, nearly as much as on the survivors whose narratives they purportedly are. Through analysis of the role that these significant others play in both the content and delivery of my survivor-informants narratives, I challenge the individuality of my survivor-informant’s narratives that their inherent particularity would seem to suggest. Narrative particularity in this sense is not only derived from individual bodies and stories, but from a plurality of lives that are all mutually tethered to and inflected by TBI.

The first way in which others are integral to survivors’ narratives is in their roles as survivors’ physical protectors during their “recovery” periods. During this time, parents or siblings can help accommodate their mobility and other impairments while those impairments resolve or survivors adapt to them. As such, individual survivors’ stories are not only of themselves but also of those closest to them. Returning to the three brief narratives I constructed earlier, Eric sees his mother multiple times per week. She takes time off of work to drive him from his assisted-living facility to his sessions at a

Brain Injury NGO I call ActiveBrain, through which he regained the ability to stand independently and even walk short distances unaided. At these events she watches over his actions and interactions with . Sarah lived with her parents in Seattle for a full year and her sister in New York for several more after her injury. Though she now lives with her husband, she continues to see her mother weekly and her many cousins that live in

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the city almost daily. She often dismisses her mothers’ treatment of her as “protective” but appreciates it, nonetheless. She also credits her cousins and sister with helping her carry and successfully care for her newborn son. Terry likewise, credits his family with providing the assistance he needed to recover as fully as he did. Unlike Sarah and Eric, he now only sees his father and sisters, who live in another state, at major holidays. They remain close to this day, however, and Terry and his father still speak regularly on the phone.

Significant others play a more prominent role in the Sarah’s story, especially in helping her to deal with the anxiety and depression that she highlights as a major part of her TBI. As she headed into the third trimester of her pregnancy, she mentioned:

My sister had a baby and so she’s certainly been helping quash some of the anxieties that I may have had about…the right and wrong things to do. Mom’s been actually a little more protective than usual, and more protective too of what she sees as the right way to be pregnant. That has caused some severe fear and sadness for me because she’s been through not only the brain injury but the neck trauma, the heart surgery, everything else. So I value her opinion but that’s been emotionally hard and has also created more fear for me about the pregnancy.

Sarah’s sister helped assuage some of her fears about caring for herself and her child both during pregnancy and after giving birth. Yet her mother’s more “protective” advice causes her “severe fear and sadness.” Sarah did not reflect on why this was so other than to say that her mother has also been present in her life from soon after she sustained her injury—while Sarah was still in a coma—and had thus “been through” all of her various medical emergencies.

After her successful delivery that was largely unaffected by TBI, Sarah said that she felt in some way responsible for the emotional difficulties that her friends and family went through after she sustained her injury and during her long road back to

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independence. This served to create narrative distance between them and her, but it also reaffirmed that her “TBI” affected many more individuals than just her. Her husband,

Sean, who was present during our final interview, explained to me how he lost sleep caring for their newborn son every other night, giving his wife the uninterrupted sleep that they both said she needed to avoid the migraines and mood swings that she frequently experienced following her head injury.

Significant others can and often are presented in survivors’ narratives more ambivalently, as well. They can and often do disbelieve survivors at key moments in their stories, accusing them of exaggerating their impairments and needs or malingering and coloring the survivors’ accounts. Charles for example, relates how he, a middle-aged male who lives several states away from his family, continues to receive money for his rent and daily subsistence from his father. In his narrative, his impairments make him unable to work, and his father’s assistance is essential for his well-being. Yet the two are estranged and have not met up in years. He claims this is because his father does not approve of his homosexuality or his alcoholism and both his father and brothers consider him “lazy” and simply unwilling as opposed to unable to work. Charles insists that he

“would probably be dead” if not for this assistance.

Some survivors narratives contain no significant others. Yet they are still implicit in and even constitutive of the narratives, even as their absent. Colleen for example had very few social interactions or relationships at the time of her injury and her narrative is at first glance highly individualistic:

TBI. Well, that’s a handful. My TBI was in 2004, in an auto accident. I got hit by the left, and, uh, it was old, ford vehicle and it crumpled. My head went into it. So, from that point there was the hospital and all of that. Something that I’m very angry about now, that I’m more aware that I didn’t understand then, was that, my bills my hospital bills got paid.

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My attorney got paid, a very good sum. And then, I ended up with like $3,000 for a lifetime disability. I do not have deep family connections, when it comes to the TBI. No one showed up. It was all on me and one friend. And I don’t remember any parts of it. I lost 6 straight years to what I call “dead brain”: migraines, in-house isolation, uh… I had one friend that I would go visit. And, my personal experience now is that a person truly suffers more when there’s not a family connection.

The narrative commences with her “getting hit” by an unmentioned other, resulting in her sustaining a “severe” head injury. When I later asked how she got to the hospital, she related how several onlookers saw the accident, called 911, and helped emergency medical officials use the “Jaws of Life” to extract her from the car and take her unconscious body to the hospital. After these actions that saved her life, Colleen’s story is then one of stark isolation, mentioning only fights with her lawyers and interactions with only one friend. Finally, years later, she enrolled in a cognitive therapy program specifically designed for TBI survivors. Only then did she “get out” of her apartment. She credits the program with directly leading to her participation in local Support Groups, where I met her. The groups in turn helped her deal with clinicians, social security officials, and local NGO staff, interactions that put her on “the positive track.”

Another way that others are essential to survivors’ narratives is through the way those narratives are delivered, just as others have found with survivors in other settings

(e.g. Hyden and Antelius 2010). As noted earlier James, is an older man who married his wife in college and has lived with her ever since. They recently moved into an upscale senior living facility in the city, despite being younger than the average residents and living on social security alone. James insisted on his wife Jane being present when I interviewed him, and she stepped in as narrator the several times he became too confused or emotional to speak. For example, when I asked James about how he and his wife came to live in the upscale facility, they answered,

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James: I’m a youngster in this building. And (*garbled) come—when the old folks helps me, and…and…(*cries) I’m sorry. I’m sorry. That’s… (*continues crying) (Jane: We’re in a building full of very successful professional people.) Can I answer one thing, before (you step in)? The only person, the only two people who really, really know and understand what happened to me is my wife Jane. I have, one sister and two brothers, and my parents were living at the time that this happened to me and none of ‘em—not a single one of ‘em—could understand what was wrong with me. None of ‘em. And (*crying) that makes me sad also. I’m very bitter about my (*garbled) my parents, my family—I haven’t seen them for a minimum of 2 or 3 years now and it’s just me and Jane now. Alright Jane, I’m sorry. Jane: So, we didn’t have kids, at the time, and it was like, ‘we’re not having kids cuz, I have no idea how he could cope.’ Um, it was, hard to cope with each other. But, lots of, flexibility when it’s just the two of you. And I could not, imagine how we could introduce a kid to this, family and, take care of the kid. So, we just didn’t have kids. And, now we’re surrounded by these people who went through school and did the great profession and had their families and the grandkids and whatnot and, whenever anybody new comes to the building they introduce them at some meeting and say “So and so was the director of this and the blah blah blah and the wife was the, publisher of god knows what, and et cetera.” So we’re sort of here like, “Oookay, we’re lucky to be here.

In this excerpt, James begins by explaining how they do not fit in with the facility’s other residents but stops speaking when he begins crying when speaking about his lack of a connection to his family. His wife steps in at this point, finishing the episode by speaking about how they do not fit in with other residents.

Eric’s mother Evelyn likewise played an integral part in my recording of her son’s narrative. When I first contacted him to participate in the study, he insisted that his mother be present for our first interview. At the very beginning of the interview, it was she who explained to me that this was both to help in case there were any communication difficulties that arose while Eric was conveying his narrative and to ensure that the narratives did not stray into legally questionable territory involving medical and other insurance claims. Before her son even began his narrative, she interrupted my initial interview introduction:

Austin: Everyone you mention in your story will not be referred to by name, and no identifying information will ever be published about them or yourself—

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Evelyn: So, you’ll erase the part about Eric from a specific neighborhood of Seattle? Austin: Yeah. Well, I’m going to erase the recording. I will take the names and places out of the transcript. Evelyn: OK.

Not only is the interjection in the narrative from someone other than the survivor whose narrative it purportedly is, it seeks to protect that survivor’s identity from unnamed others who may use it to affect his financial and medical affairs. With her interruption, Evelyn thus immediately expands the audience of the narrative to include potential absent others from whom his story needs to be protected. The rest of the interview proceeded in much the same fashion, as Eric’s mother invoked these others in subtle and indirect ways (e.g.,

Irvine 1996).

I interviewed Evelyn several months after my first interview with her son. She and I had by this time built a mutual trust as not just ethnographer and informant but as two individuals whose lives both involved TBI—I as a survivor and she as mother of a survivor. I thus felt comfortable asking if she ever gave her son’s story without his knowledge, and she replied:

If I tell someone that I have that I do things with on the weekend, it leads into (the fact that) he’s in a wheelchair and the activities that we do. (I explain that) he has a head injury and people wanna know how and why. And so I probably talk about it several times a week. I mean because it’s just the natural succession of questions when people say, “Well what, what is your son doing?” before they know that he had a TBI.

Through narrative, Evelyn reframes TBI not just as an injury her son had but also as a condition that requires her continued direct involvement in his life. She uses this story to explain to others why she cannot visit with them over the weekends. It becomes the story of her own life, limiting her social activities in a way that she explains to others through the narrative of her son’s TBI

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The TBI that emerges from these narratives is thus made even more particular, defining and belonging to the lives of multiple individuals and not just survivors. As such, TBI narrative relies even more on the strength of the initial tether, which grounds it in a single and knowable physical event before expanding and specifying its scope to the comprise the particular events of several lives at once. It can then be told by survivors and their significant others, used as justification for seemingly unrelated accommodations and allowances in their lives.

Conclusion

The meaning of TBI that emerges from my survivor-informants’ narratives is thus far more than a singularly authored tale or the diverse-yet-singular injury and the cocktail of impairments it causes. At heart this is because my survivor-informants’ narratives are, like the survivors themselves, diverse and distinct. The ways in which they speak of their experiences are even more particular, though they usually assume the same narrative structure. Their stories ultimately equate TBI and their lives, filling out the relatively hollow bio-political construction with specific experiences with impairment, the particular details of their lives, and their social interactions with others. Although these narratives share no universal themes, a brief analysis of their discursive elements reveals one universal: the centrality of others to their stories. Thus when survivors and those around them tell stories or otherwise speak of their lives, they give new meaning to the acronym, one that is both particular and social.

This new TBI, what I call TBI-as-narrative particularity, is constituted by more than an individual brain, body, or life. Others are ineluctable and inescapable in it. Even

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in their absence, they help constitute the story, sometimes even sharing its authorship and narration. Ultimately, my policy-informant’s catchphrase of “if you’ve seen one TBI” does not refer to one illness or one injury. Its content may be particular, but it is not singular. TBI as it is narrated, the TBI that is one of the primary means through which most Americans learn of the acronym’s meaning, is a fundamentally social object. This

TBI is constituted by more bodies and lives than the one at its center. It is briefly tethered to them, filled out with the particularities of individual injuries, impairments, and lives in the course of narration. Once the tether has been secured and the tale is told, TBI can then be cut loose, tethered to other stories in other social contexts without losing its original meaning or the richness and particularity with which other narratives fill it out.

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Chapter 4 “It happens to the whole family”: Living “With TBI” as Complex Embodiment

Introduction

As I spent more time with my survivor-informants, what they spoke of as their

TBIs began to take on shape and meaning as more than narrative. Responding to

Scheper-Hughes and Lock’s Prolegomenon (1987) for a second time, in this chapter I will investigate the “social body” of TBI. I witnessed this new body in weekly support groups, more informal gatherings with my survivor-informants, and interviews with those that played a key role in their narratives. I thus began to connect their stories to setting, action, and relationship in a way that was distinct from the tales they told. TBI became something my survivor-informants and those around them experienced and lived with on a daily basis. It was not something that could be easily seen, told in a quick story or clever phrase, or diagnosed from a doctor’s report, brain scan, or therapeutic interview.

This new TBI was something only a few individuals around the survivor ever experienced. It was quotidian and intimate, occurring daily in unremarkable settings.

Moreover, it was social, born in interactions my survivor-informants had with those closest to them, something that impacted all of their lives and they all could be said to

“live with.”

Taking a cue from Goffman (1963) and many of the disciplines he influenced, I approach the theory behind this chapter from an interdisciplinary perspective,

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pragmatically adapting and adopting three distinct frameworks. The first of these is phenomenology, already well established in medical anthropological studies of bodily illness and injury. Using phenomenological theory, I assess how my survivor-informants embodied the effects of their injuries. The second, which Goffman himself popularized

(1959), traces how survivors and those closest to them come to construct TBI as something the mutually perform. The last framework comes from the relatively new and humanistic and literary scholarship of Disability Studies (DS). DS scholar Tobin Siebers stitches phenomenological and performative approaches together in a theory he names

“Complex Embodiment,” identifying how disabilities like TBI come into existence in the complex interplay of bodily condition and social performance.

This chapter harnesses these theories in special analysis of my eight in-depth case studies with individual survivors. It moves beyond survivors’ particular accounts to include others’ experiences and constructions of TBI. For these significant others— survivors’ partners, family members, and roommates survivors interact and depend on regularly—the acronym also appears in and affects their daily lives. 27 TBI thus becomes something that impacts multiple people, each of whom embody and perform it in their own way. Including these others in my analysis, I identify the interactive meaning of the acronym, fusing participant observation and interviews of survivor-informants and those they are closest to in the quotidian settings where they live their lives to understand what they mean when they claim to live “with TBI.” The new distinctly social meaning that will arise through this analysis is one I call TBI as a complexly embodied and performed disability, or more simply, TBI as complex embodiment.

27 As mentioned in Chapter 2, two of my survivor-informants who participated in my case studies only had one significant other that they wanted to include in their case studies.

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I do not intend to downplay the very real disabling effects of many of my survivor-informants’ diverse impairments. Some of them have severe mobility restrictions; some have faulty memory problems that make it impossible to complete most tasks required in normal employment; some have severe migraines that can render them bed-ridden for days on end. Each of these in itself can be disabling. Rather, I want to explore what might be disabling in TBI, itself, outside of these impairments. My analysis begins with a discussion of exactly how TBI is embodied by my informants, as well as how they come to perform it in their daily lives. I then trace how, through the complex interaction of phenomenological embodiment and social drama, TBI comes to have disabling effects on survivors and occasionally their significant others. Ultimately, in this chapter on TBI as complex embodiment, I explore what it means to live “with” the acronym that is more than a singular injury and its diverse effects, more than the particular narratives of its survivors. This TBI is experienced by multiple individuals at once, something that many of my informants claimed, “happens to the whole family.”

Embodying TBI

The TBI that is the subject of this chapter is first and most obviously a bodily phenomenon. In attempting to uncover and access that experience, I necessarily begin with my survivor-informants’ narratives of their experiences. My analysis quickly leaves these narratives behind, focusing on how survivors experience the world in small, intimate, and less narratively noteworthy moments that constitute their daily lives. I also explore how they interact with those closest to them, those who not only help survivors to live with but also come to embody effects of the acronym themselves. TBI in this light

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presents a sort of quotidian and mundane experience that is constituted by multiple individuals.

The philosophical tradition of phenomenology has long understood that embodiment is a process that necessarily includes both the self and others situated in a particular social context. Heidegger (1953 [1927]) claimed that a fundamental part of the specifically human meaning of being is da-sein, or “being there.” He suggests that every being, both animate and inanimate, is always part of its surrounding social context and cannot be abstracted from it without fundamentally changing its nature. For specifically human beings, da-sein not only includes simple presence but individuals’ agentive interaction with the particular places and times in which they exist. In other words, individuals, their actions and interactions, and the contexts in which they exist, are inextricably entangled.

Accordingly, this explains many of my survivor-informants’ experiences and actions. Cheyenne for example is a late middle-age TBI survivor from the upper Midwest who often wears a furrowed brow to match her brusque manner and near-constant migraine headaches. Her senses of hearing and sight became much more sensitive to over-stimulation after her injury. Loud noises or bright environments can increase her migraines’ severity, which in turn lead her to vomit uncontrollably. Cheyenne’s daily existence is thus one of constantly judging every situation by whether or not it might cause this chain reaction. She will remain in or leave of her surrounding environments accordingly. Cheyenne will move into shaded areas or put on sunglasses to shield her from sunlight, ask others to speak more quietly or leave certain situations to avoid loud noises, and only participate in events when there is a bathroom nearby.

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Phenomenologists further argue that existence is only ever possible in a world always already inhabited by other beings. Consequently, no individual human existence is possible without others (Heidegger 1953 [1927], Husserl 1960 [1931]). Others constitute any given individuals’ existence, and every individual’s existence, and consequently their embodiment, only makes sense in relation to others.

This is exactly how many of my survivor-informants’ experience and come to embody their TBI-related impairments. Charles, an early middle-aged gay man from the

Eastern US, has similar problems with hearing, light, and sensorial over-stimulation to

Cheyenne. For him, these usually occur in public settings and their effects do not include vomiting. He will leave such an environment before any of these problems can occur.

Those he abandons may take offense and not invite him to “hang out” with them in the future. In response, Charles becomes depressed, which in turn can make him less pleasant to be around. His embodiment of TBI is defined by the resulting feedback loop: social isolation feeds into his increasing alcohol addiction, which in turn heightens his depression, driving him to drink, and so on. Notably, he never complained of natural causes of his sensorial problems, however, only social ones. It is thus social over- stimulation—people speaking out of turn in group settings, loud music playing in public venues, or car horns blaring over city streets clogged by Seattle’s rush-hour traffic jams—that sparks his TBI-related problems.

Merleau-Ponty (2012 [1947]) builds on these earlier phenomenological claims in ways that further illuminate my survivor-informants’ lives. He chooses to focus specifically on human perception of the world, modifying Heidegger’s earlier terminology accordingly. Merleau-Ponty’s theory is not simply of human beings in the

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world, but of what he calls “being-to-the-world.” His is a specifically interactive theory of human beings, who exist in a continuous process of change and adaptation that is, as earlier phenomenologists held, constituted by the social and environmental contexts in which they exist (Grosz 1994). He demonstrates the principle in the famous case study of

“Schneider”, a brain injured man who cannot perform any abstract action such as moving his arm without being able to concretely see the action taking place. That is, his very actions and interactions with the world are dependent on his perceptions of that world. By implication, all human ways of perceiving the world and interacting with it are never just in response to individuals’ own bodily conditions or actions but their interactions and experiences with others, as well. In Cheyenne’s case, that involves always perceiving and judging situations based on whether they likely to increase the pain in her head and make her physically ill. For Charles, that means avoiding becoming overwhelmed by sensory stimulation through isolation or alcohol. For each of them, the ways they experience and embody the effects of their original head injuries, what they each speak of as their TBIs, depend on and only make sense within particular environmental and social contexts.

As a human science, anthropology has long dealt with the same perspectives.28

Medical anthropologist Csordas (1990), for example, draws on these earlier anthropologists along with Bourdieu’s theory of habitual practice of “habitus” (1990b

[1977]) to develop a phenomenology of “cultural embodiment.” He argues “…embodied selves inhabit a behavioral environment much broader than any single event” (1990: 39),

28 Earlier cultural anthropologists Mauss (1973 [1935]), Turner (1967), and Geertz (1973) for example used phenomenological perspectives to explain how human selves, bodies, and body parts only operate in specific and constitutive times, contexts, and communities. Although these theorists still retain a focus on individuals and individual bodies, they understand the meaning of these individual selves, bodies, and body parts as given by and inextricable from social and cultural interpretations about them (Desjarlais and Throop 2011).

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as sick and impaired selves are both constituted by and constitutive of their wider physical conditions, habitual actions, and their social and cultural settings. These actions and settings are can be manipulated and used in practices of medical and religious healing, which thereby come to effect physical conditions (Csordas 1994). Other medical anthropologists have also used phenomenology to study how sickness and disease are embodied and experienced by both the ill and those around them in ways that only make sense within specific cultural contexts (Good and Good 1994, Good 1994).

More recent medical anthropology has in turn traced how bodily comportment and social experience can in turn become embodied. Contemporary medical anthropologists study how therapies attempt to help the chronically ill to “rehabituate” themselves and adjust their bodily conduct accommodate lives with chronic conditions that are deemed incurable (Manderson 2011). Their phenomenological reality is one that

Wahlberg (2018) names “morbid living”, and the mission of contemporary healthcare in such circumstances becomes to “improve the lives of those living with disease” (731, emphasis mine). Other anthropologists have identified how recurring injustice, political oppression, and economic marginalization—all of which are present in some form in my survivor-informants’ stories—can lead to illness and even death (Gravlee 2009, Briggs and Mantini-Briggs 2003, Garcia 2009). They criticize those who attempt to respond to the latter without addressing the former, noting how responses to injury and illness can themselves lead to many of the harmful consequences they purport to solve.

TBI, though it is neither sickness nor disease, also falls within this analytic. My survivor-informants all developed a new mode of being-to-the world after their injuries, a type of embodiment that many refer to as living “with TBI.” Two survivors in particular

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stand out within this perspective: Frank and Sarah. For the first, as Frank and I continued to meet over the course of my fieldwork, the diverse elements of his long and often rambling narrative began to coalesce. I began to understand how the “little things” that were the focus of his narrative were not just story elements but very real bodily concerns that he dealt with on a daily basis. I first saw a hint of this during our first 30-minute

“planning meeting” for his Case Study, which we conducted over Skype. He noted how comfortable he was interacting with others online, as he was able to carry his computer with him wherever he went in his house while still clad in casual clothes. When we discussed this later, he admitted that the real reason was so that he could hold a discussion free of distractions and worries that he felt most people would disregard. For example, if we had held our first meeting in person, he would have had to groom and clothe himself appropriately, arrange transportation to the meeting, and make plans to care for his son while we met. Accounting for these “little things” would have drained his energy and caused him to spend the rest of the day in bed. Because of this, he would not have been able to look after his son, grocery shop with his mother, or take care of anything else that needed his attention.

A few days after this discussion, we agreed to meet in person. When a car approached me where the bus from Seattle had dropped me off, I was surprised to see two figures in the car that was waiting for me. Was the mystery person his son, was it his new girlfriend from Vietnam, was it a friend? No, I realized; it was Frank’s elderly mother, Fiona, who drove while her adult son sat comfortably in the passenger seat.

Frank confessed as I got into the vehicle that he was too fatigued to drive the 20-minute journey to the bus terminal to pick me up. He would also have been unable to drive the

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steep and winding forested mountain road back to his home or complete the session that he and I had planned for the day.

When we reached the house, this began to make sense. The house was full of unpacked bags, boxes of bulk goods recently purchased from Costco, and newly-placed furniture that was so new the leather still squeaked as I sat down. Frank had just come back from a trip to Vietnam, I discovered, where he had proposed to his Vietnamese girlfriend. When I asked Frank if he and his son had prepared for the hike we had planned, he said that he become too tired unpacking from his trip and asked apologetically if I could observe him finishing his efforts, instead. The two of us then went downstairs to what I thought was a spare room where his son was playing video games. The room was filled with suitcases, storage containers, what I had assumed was a spare mattress, and the usual debris associated with such spaces. Frank surprised me by mentioning the room was his bedroom, however, which he intended to “unpack” during our session together. The suitcases, boxes, and random assortment of clothing, bags, and knick-knacks were simply things he had not yet put away. When I asked him why he had so many suitcases and travel bags, he mentioned these as being necessary for the many

“little things” he had brought back from Vietnam. He had so many of these small items to put away and other mundane matters to take care before we met that he had become too fatigued for a hike.

Instead, I simply observed him as he continued to unpack. His first task was to make the bed, which he did by taking the bedsheets and comforter off the bed and then putting them back on without any great arrangement. Next he picked up several documents from the floor and spread them on the bed, which he did not stack so much as

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go through, throw a few into the trash, and place them back on the bed. There was no particular order to these piles that I could discern. But Frank reassured me that he now knew where everything was despite the appearance of disorganization. Soon after this start, he noticed a fingernail clipper on the floor and stopped to trim his fingernails, saying that he wanted to be “more opportunistic” about taking care of such tasks when he first noticed them. I do not know if he cut all of his fingernails because he soon returned to his work, which he stopped a short time later to call his fiancée. At one point during this chaos, the closet door came off its hinges and he and I spent several minutes trying in vain to reattach it before he gave up and said he would do it later. He would occasionally call out to his son, who responded with short words and phrases as he focused on the screen in front of him and the controller in his hands. Frank would also keep up a steady stream of conversation with me, discussing a variety of topics that had little relation to each other. The rest of the session was equally disorganized and frequently interrupted. It ended after a few hours when Frank grew fatigued and asked me to interview his mother while he rested on the bed, which was still mostly covered with clothes, papers, and other

“little things” from his trip.

When I asked him about this during our interview and our final check-in after he had had the opportunity to rest, he explained that he had difficulty multi-tasking and thus he was not fully able to organize his room while talking to me and answering my questions. The slight interruptions and distractions were included in what Frank had earlier called “little things.” They were small matters that demanded his attention and distracted him from completing his intended tasks. The “little things” were thus more than matters of concentration; they were bodily, in that each of these minor distractions

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refocused his entire attention and required him to physically reorient himself to them.

What Frank spoke of during his first narrative interview were not mere rhetorical device—though they may have served as such at the time. They were fundamental aspects of his bodily existence and constitutive parts of his life “with TBI.”

Most of my survivor-informants lived with their parents immediately following their injuries, and like Frank several of them continued to live with them to this day. As mentioned in the last chapter, Thomas also lives with his mother. This seemed inexplicable, as when I conducted my two sessions with Thomas, observing him at work and hanging out with a friend, he seemed capable of living on his own. Thomas told me how his mother would go to work before he woke up in the morning and he had feed himself, do his dishes, and would clean up and air out the apartment after smoking his medical marijuana before work. Yet when I interviewed Thomas’s mother, Theresa, she mentioned that she prepared his meals, cleaned the house that the two of them shared, and took care of other miscellaneous tasks of running a working-class US household in today’s society. Thomas rarely does any of these things himself, she told me, because he is rarely at home when his mother is working at these tasks. He does not witness—nor does he appear to be aware of—how much she accommodates him.

Theresa’s life today revolves around the work that she does caring for her son, their apartment, and herself, in that order, as she claimed. She will leave work early if her son needs a ride and will arrange time with her family and friends nearby around his schedule. Thomas’s mother thus lives a life “with TBI” that remains largely unaccommodated and can in some ways be disabling. She also admits to suffering from exhaustion because of the schedule she needs to keep in response, which in turn affects

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how she is able to conduct her daily life. This feedback loop is in many ways identical to that experienced by her son. She does not view this relationship as burdensome and says she does so happily, but she also wishes for her son to be able to move out on his own someday soon. Theresa insists that this is not to relieve herself of the burden for providing his accommodations; it is what he himself wants.

The same was true of many of my other survivor-informants, whose significant others would offer them small bits assistance when they would not notice, so they could lead the lives that they wanted. Sarah’s parents, especially her mother, filled this role in much of her life “with TBI.” She lived with her parents in a city near Seattle for nearly a year after her injury. During this time, they would drive her to her medical appointments, care for her while she recovered from her many physical injuries on top of her brain injury, and try what her mother described as “beyond our best efforts” to ensure their daughter’s safety and health. Yet Sarah spoke of her life “with TBI” as truly “beginning” when she moved in with her sister in New York:

I was just so depressed living in in Washington. I couldn’t drive I couldn’t get around I didn’t feel like independent at all, and you know I was like 23. I wanted that independence back. Um, and so I—that was a big reason [for my move], just like feeling like my life had completely stopped. And I know that my like family was not very pleased that I was moving there. But once I did, it was still hard. I was still walking around crying all the time. I was very depressed. But, I could start like, just you know doing, little things. Like, my schedule stayed pretty routine, but I could walk to physical therapy instead of getting someone to drive me, cuz it was 2 miles when I was at my parents’ house. Or I could, um, you know, just simply go to a store. Or just anything that felt like giving me some independence. I learned how to take, the busses as well as I already knew how to do the subway—but things along those lines. So it was just, taking small steps back towards feeling independent. And truthfully, I was living with my sister at the time. So she was still like fixing me dinner and checking in with me and, you know all that sort of stuff.

The trend continued when she next moved from New York to California a year later:

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I wanted to do the teacher training [in yoga, which she taught and practiced right up until a few months before giving birth during my fieldwork] and had also met someone [in California]. And so we had been kind of like talking long distance and then we, um, sort of became more serious. So there was a little bit of that, um, but [California] felt like a fit because I could like ride a bike there, I still lived in an area where I could walk to other people, being around people. And then really I was in this yoga community. So that was that was really—you know I would do yoga almost every day. Um, and that was a really helpful routine.

However, her network of friends in California did not make up for her family network of significant others, what she describes as an “army of cousins.” She returned to Seattle after the training, where she was finally able to develop a life with the independence that she wanted while still remaining embedded within a network of significant others. Her family and her “army of cousins” in Seattle readily stepped in to give her rides to the store or to medical appointments, go on a hiking trip, or simply chat over a cup of coffee when she asks. These cousins all understand what she defines as her TBI, having spent time with her in the hospital, when she lived with her parents, and after she had moved back to the city. For Sarah, life “with TBI” is about her life leaving and returning to her family and other significant others.

When we worked together to compose her case study, Sarah had recently married and become pregnant, giving birth to her first child shortly before I left the field. Her husband Sean served as her primary significant other at this time. When we spoke, Sean painted a picture of himself as little more than a careful observer of his wife’s daily health and the role that TBI played in it, but it was clear from their interaction that he played a more active role. He constantly monitored and assessed Sarah’s condition throughout her pregnancy, gauged how long she was able to stay at social events and would leave when she grew fatigued or was suffering from a migraine, and judged whether he was being overbearing or burdening her with his concern. After the birth of

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their son, he would wake up to care for their son during the night so that Sarah could get unbroken sleep, watch him when she needed to nap during the day, and take care of many small and incidental chores around the house so that Sarah could focus on herself and their son.

The crucial role that these others play in Sarah’s life “with TBI” was substantially magnified when she gave birth to her first child weeks before our final interview. Sleep, which had been so important to her mood, physical functioning, and wellbeing as a survivor, suddenly became very hard to come by. She mentioned only getting a few hours of sleep per night as she would constantly wake up to attend to her newborn’s needs, which left her constantly fatigued, increased the frequency and strength of her migraines, and heightened the emotional instability that characterizes her TBI. Her husband would often step in at these times so that she could remain asleep and thus be more at ease the following day. He briefly joined in my final interview with Sarah, mentioning that he would wake up once or twice in the middle of the night to bottle-feed their baby so that she could remain sleeping. Sarah had not even been aware how often he did this until our conversation, expressing disbelief until he insisted several times that he did this regularly.

They both agreed at this moment that she was not able to regulate her emotions or maintain her bodily stamina without this continuous sleep that his intervention allowed her to get. For all three of them, TBI is thus about sleep, as Sarah’s newborn reduces the quality and amount of sleep she is able to get, her husband loses sleep while trying to help her avoid TBI-related impairments that arise when she does not get enough sleep, and the newborn constantly wakes up due to hunger, diaper changing, or the simple need for his mothers’ embrace.

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Not all of my survivor-informants had significant others nearby, however. Charles for example does not have any family around him and lives by himself in a trendy neighborhood of Seattle. He moved away from his childhood home in another state in the

1990s, losing contact with his parents and brother after he came out as gay. Their relationship changed at the time of his injury, as he mentioned in his narrative:

I hadn’t talked to my mom for about 7 or 8 years (at the time of my injury). And she called me in the hospital, um, the first morning, right after I woke up, and I was too out of it to hang up on her. So that’s why she and I started talking again. And now she and I are actually really close.

Charles’ parents supported him financially after his injury, sending him money to pay for rent and to his daily expenses. Tragically, however, his mother passed away soon after I interviewed him, however, which sent him into an even deeper depression than he already suffered in his isolation. His father continues to send money for his apartment and his daily life, but the two do not often speak to each other. Charles and his brother have also been estranged for years, and there is no one that serves as a significant other in his life. He instead insists that his two cats are “the only reason I’m still alive” suggesting that he might kill himself if it would not leave his two cats homeless.

His life “with TBI” is thus a life defined by social isolation and alcohol abuse alongside his grief for his mother. Charles depends on his father’s continued financial support and does not know what he would do if he lost it, the possibility of which was forced on his attention with a downturn in his father’s health. As such, what TBI means for Charles is permanently tied up in his family relations, relations defined as much by absence as by presence. He does not feel that he would be able to work a normal job, though it is not clear what impairments lead to this result. He also does not feel equipped

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to lead any sort of a normal social life and outside of TBI support groups, his only interactions are either with cats or bartenders.

Charles, Sarah, Thomas, Frank, and Cheyenne’s particular lives are entirely distinct. They do not know each other. Yet they have in common the ways that significant others mediate what they refer to as their lives “with TBI”, up to and including the ways that they embody the effects of their head injuries. Cheyenne’s family and friends will often act in such a way that she cannot avoid becoming sick due to over-stimulation.

Charles’s embodiment of TBI comes from his problems with his family and his distaste for all but the quietest environments. Sarah and Frank each share problems dealing with small and otherwise inconsequential matters with their significant others. The ways that they move through the world, their ways of “being to the world” – eating, sleeping, socializing, taking care of the “little things” – are tied up in and mediated by others’ lives.

. This is clearly in keeping with phenomenological philosophy as well as with later anthropological takes on phenomenology. From this anthropological-phenomenological viewpoint, “TBI” is what both survivors and those around them experience and live with.

Performing TBI

Phenomenology does not fully explain how my survivor-informants and their significant others act in response to their embodiments, actions which come to define what they mean when they speak of TBI. Medical anthropologists and other scholars have identified the limits of phenomenology to interpret human lives, which are actively lived and hence performed, and not only experienced or embodied. There have been numerous variations on this dramaturgical perspective over the last half century since it

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was introduced. In this section, I will present and analyze two in particular that work especially well with my survivor-informants’ and their significant others’ lives “with

TBI:” the original sociological metaphor of Goffman (1956) and the feminist adoption and subsequent reinterpretation of Austin’s (1976) influential notion of “performativity”

(e.g., Butler 1993).

To begin with, Goffman (1956) famously and influentially drew on the analogy of social life as dramatic performance to show how casual and professional interactions behave similar to scripted performances. However he was careful to note that these performances are not necessarily disingenuous or unreal. Instead, Goffman used the analogy to show “the structure of those entities in social life that come into being whenever persons enter one another’s immediate physical presence” (1956: 254). Groups of individuals, within his framework, intentionally or unintentionally stage a “front” for some real or imagined audience. Through their actions, they perform and demonstrate their status as colleagues, professionals, family, or others who undertake what are generally scripted interactions. Of course, he notes, as these are real interactions and real relationships rather than purely staged ones, they often have no audience. But they are nevertheless still roles enacted for—in this case—imagined audiences. The performance keeps unruly and spontaneous “backstage” interactions at bay, buttressing the structure and flow of contemporary society. Moreover, any given player might be in several performances at once, risking confusing the roles, settings, and other elements of stage play. As only one performance is dominant at any given time, however, the performers must stick to specific definition or intended interpretation of their actions and interactions.

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Such rules are often difficult to follow, however, marring the performance, and causing problems for the performers, audiences, and presumably the smooth flow of social life. In later works, Goffman modified his metaphor, acknowledging that there are many situations when such fronts are impossible to maintain and the line between a front and backstage is often fraught or impossible to maintain. . Especially for mental patients, prison inmates, and other stigmatized persons, the line between a front and backstage is often fraught or impossible to maintain (1961, 1963). In these cases, an individual does not remain within the bounds of a given role. The individual thus loses control of the definition of their performance and may become distanced from the role that they ought to play. In some cases, these individuals can be shunned for taking on an identity that does not fit with any set or recognized role. Their identity in these cases is held as

“spoiled” (1963: 12). Survivors of moderate-severe TBI, who may no longer be able to maintain their pre-injury performances due to the extensive brain damage that defines that diagnosis, seem to clearly fit within this framework.

Eric’s relationship with his mother Evelyn resembles Goffman’s classic metaphor most closely. Though she does not live with her son, and he has professional caregivers to handle his medical needs in his Residential Care Facility, Evelyn visits him at the home multiple times per week. She takes him to informal rehabilitative programs at a local Day Center for brain-injured adults, social events for TBI survivors and their caregivers, or simply sits with him while he watches sports on television. She is careful not to upset him or expose him to situations where he would lose his temper, which she acknowledges does happen from time to time. As I witnessed multiple times while interviewing and observing Eric, she works constantly at this. But it does not appear as if

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she is attempting to hide his unscripted conduct. Rather she simply responds to his expressions and words to ensure that he is content and his needs are met.

In a Goffmanian sense, Eric’s mother is clearly the director of their performances.

At a year-end party at ActiveBrain that I attended, she wheeled him in his wheelchair, followed him around the room as he talked to other participants and their family members, helped him select and get his food from the refreshment table, and watched the clock so that she would get him home by the time his Residential Care Facility required.

Eric, meanwhile, was as careful as he could be to maintain a pleasant manner in his interactions with others and with me. Together, they staged a play that was partially for my benefit of their lives “with TBI” that saw her in the director’s chair while Eric played the leading role.

Evelyn also knows when to exit the stage and let another performance take place.

When I had earlier observed Eric at ActiveBrain, his mother only left his side when it was time for “dancing.” This was an activity run by BrainDance, a local NGO that provides alternative therapeutic exercise for brain injury survivors in the city. When his turn came, Eric’s “dance” involved him standing on his own while the instructor stood in front of him to help if he started to fall. Once he was up, he placed his hands on her waist to get his balance while she steadied him with her hands on his shoulders. The two of them then danced in a slow circle around the classroom, the instructor swaying slightly to the sound of soft dance music and Eric matching his shuffle to her rhythm. When they finished the circle, the instructor eased Eric gently into his chair and the entire group burst out in applause. Eric cheered the other six participants when they “danced,” wheeling his wheelchair over to theirs to congratulate them. Only when everyone had

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finished their dancing and the instructor switched off the music did Eric’s mom return, hugging him in congratulations. The scene concluded, she wheeled him into the next room for lunch.

According to Goffman (1956), multiple social performances may occur at once.

Only one of these will dominate, and in a successful performance, all players will switch to the dominant performance on cue, with its distinct order of cast, directors, scripts, and scenes. In this framework, Eric and his mother first performed as a happy and supportive duo, mother/caregiver/director and son/patient/cast member. They then switched performances and she became the spectator while another stepped into the role of caregiver and director, the “dancing” instructor. Eric meanwhile became both a participant and cast member before playing an active and co-equal role as a “dancer” with that instructor. Finally, his mother reentered the stage as both proud mother and director once as the group was wrapping up. I was careful to note in my fieldnotes that there appeared nothing disingenuous about these distinct performances. In this way, just as

Goffman predicted, the entire ensemble performed Eric’s TBI as something for which he was cared by his mother, instructed by his dancing instructor, and an element which he and the other dancing students shared.

Sarah, one of the most traditionally “able” of my Case Study participants, also performed multiple roles. However she did so in ways that highlight other aspects of the performance of TBI that my more traditionally “disabled” survivor-informants could not.

At our first case study session, Sarah performed as what Goffman (1956) calls a “one- man” team, speaking to me not as a research subject but as a colleague. She even went so far as to adopt the confident and independent stance (Irvine 2009) of one who counseled

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individuals like me who experienced severe and life-altering traumas, giving me advice on the difficulties I was having as a survivor and ethnographer. After the interview, we walked up the hill from her apartment to her yoga studio in the warm glow of a late summer’s afternoon in Seattle. There she assumed the role of a different kind of professional, requiring me to register and pay for the class before I could observe her at work. Sarah then set up the studio, greeting her regular clients as they came into the orange glow of the brightly lit studio. They grabbed purple yoga mats from one side of the room and sat on the mats facing her and I, playing along, followed suit. Sarah conducted the class confidently and collegially, treating all participants as her equals, attending to their failures without criticizing them. She compared any mistakes they made of difficulties they had to her own struggles when she had first learned yoga, many years earlier. She even extended this treatment to me, an obviously unskilled yoga practitioner who was struggling to maintain the poses and sweating profusely in the hot and then- crowded studio. I followed her lead and played the role of client, never outwardly acting in my role of academic observer. Sarah never gave the class any indication that she had sustained a severe TBI in the past, either. She strictly adhered to the role of confident-yet- pregnant instructor, limited in her movements only by her concern for the unborn child inside her.

When we left the yoga studio after an hour and a half of instruction, she was clearly fatigued. Her husband also understood this and came to pick us up on his way home from work, driving us back to their apartment where I could interview him and do revisit the session’s events with his wife. The final front that Sarah gave was thus of a tired, pregnant, and happily married, expectant mother. After completing all the

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interviews we had planned for the session and heading out on the warm summer’s evening, stomach growling because I had not yet had the chance to eat, Sarah bid me farewell with the gift of a piece of cantaloupe and a protein bar. Her husband was clearly not pleased, complaining that it was his last bar, but she forced them on me. The act reinforced her general performance as a confident and independent soon-to-be young mother, relatively free from the worries about her health and her pregnancy and her relations with her significant others that she had confided while delivering her narrative weeks earlier.

Yet not even these cases fully conform to Goffman’s idea of staged interactions with cast and director, staged fronts and informal backfields, players and audience members, and the like. In Sarah’s and Eric’s cases, their lives “with TBI” were clearly intersected by other factors, such as Sarah’s pregnancy, Eric’s mobility issues, and other more personal matters. They and their significant others hinted at these intersecting concerns, but would not go into detail with me, an outsider to their relationship. Society does not have any sort of a script or stage directions for “TBI” like it does for most other conditions or a clearly defined “sick role” (Parsons 1951) for survivors who require caregivers. The front of their performances was not stable or singular, despite appearing so at times. Throughout my sessions with Sarah and Eric I could see hints of other performances occurring beneath the surface of what they were presenting, performances that were never entirely sublimated to the dominant performances they strove to give.

In many ways, TBI performances are more akin to Goffman’s later and more influential take on stigma (1963). Stigmatized individuals are those who do not act within accepted roles or guidelines, drawing scorn and derision from others. Survivors and their

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significant others, viewed through this lens, are constantly tarnished by the fact that they do not fit into accepted or understood roles. I interviewed Olivia’s husband, Oliver, for example, on a warm late summer evening in Seattle. When I rang the doorbell outside their upscale apartment building in a hip neighborhood, the two of them showed up together, his arm around her waist, and asked if I would join them for a beer on their roof.

We first went to their apartment, where Olivia, who had still not found work, had months earlier told me that her husband had threatened to leave her if she did not secure a job. I played along with the happy and pleasant front they had assumed when they greeted me with at the door, complimenting the décor of the apartment and the paintings on the walls. Oliver proudly told me that his wife had painted them, some before and some after her injury. He likely knew that I had already known this, as Olivia had told me about the paintings when I interviewed her months earlier. We then went upstairs with beers in hand and sat near an outdoor fireplace that was clearly meant for younger and more prosperous residents to gather around for parties. They requested that I conduct the interview then and there, with both husband and wife present, and when finished they suggested that we get together again for a meal or happy hour.

The scene at first would not have seemed anything other than a young married couple getting together with friends at a swank apartment building. Such was clearly their intent, but Olivia broke with this performance multiple times. At one point, she turned to look Oliver and exclaimed “Sometimes it seems like you don’t even like me!” He had not said anything that gave me this impression, and instead of reacting to his wife with anger, he kept up the front they had until then shown. He did so two more times after that when she “spoiled” (e.g. Goffman 1963) the performance that they had otherwise been

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flawlessly executing. When they both walked me to the building’s exit as Oliver’s arm slid back around Olivia’s waist and we parted much the same as happy terms. Olivia’s actions only marred this performance for a brief moment, but it was enough to appear my fieldnotes.

However, Goffman’s take does not perfectly explain this strange scenario.

Stigmatization occurs when certain individuals are not able to perform in ways that fit within roles that others expect them to adopt. Olivia and Oliver, however, live together and Oliver was well aware of his wife’s TBI-related behaviors. Butler’s (1993) famous recasting of Goffman’s analogy as “performativity,” adapting Austin’s (1976) linguistic delineation of the performative speech act, helps explain this dynamic. In this theoretical light, TBI is not something that mars an otherwise normal performance, it is something

Olivia and her husband actively do through their interactions. Just as for gender performances, both Olivia and Oliver try to occupy a kind of unspoken norm and thereby effectively perform TBI as a kind of failure to fully occupy that norm. Olivia for her part

“does” TBI by speaking out of turn during her husband’s interview with comments that contradicted his account of their happily married life. Oliver, in ignoring Olivia’s interjection, holds to a more normative conception of what ideal newlyweds should be— possessing a kind of marital bliss that admits no interruption. He attempts to cover over his wife’s conduct as dirt to be swept under the rug. Oliver’s actions construct his wife as inferior and flawed, exemplified when he did not acknowledge her interjection and neither took offense nor responded to her allegations. He simply continued on answering my question about their happy married life together, in which TBI was not a prominent feature, while both he and I knew that it was. Oliver and Olivia performed TBI as a kind

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of necessary failure to meet the normative construction of happy newlyweds. It was something to be shuttered from view, unspoken of—at least, not in the context of their public interactions. It was a private failing of Olivia’s that Oliver would not bring out in public.

I knew from my numerous conversations and interviews with Olivia that things were not nearly as rosy as her husband attempted to portray them. Despite being relatively newly-wed, the two had not been sleeping in the same bed and had not been intimate since soon after they wed, which itself was soon after her injury. The two slept in separate beds the entire time that I was in the field collecting data. Moreover, Oliver allegedly refused to treat her as if the TBI continued to affect her and insisted that she get a job to contribute to the family income. When she lost her court case and was no longer allowed to practice as a nurse in the city without significant assistance, he refused to accept that there was any reason for this—or so Olivia thought. In other words, Oliver was clearly performing his wife’s TBI as well as she was, but in a different fashion. For him, it was something private, between the two of them—something to deny or cover over in public. Of course, he could not deny that it had happened as he was one of the first people at the scene to approach her unconscious body. He also could not deny her prominent impairments with speech, memory, balance, and “orienteering,” as he had witnessed numerous instances of all of these. Instead, his public downplaying of her impairments was all part of his conscious performance of TBI as something strictly kept between him and his wife.

Other survivors would have similar interactions with their significant others but in reverse order, with their significant others interrupting and correcting them. One of my

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first survivor-informants, James, is an older man who had survived a severe bike crash as a youth and had depended heavily on his wife ever since. During my interview with him and wife, James made several claims and gave several details in his narrative on which his wife immediately corrected him. Early on into James’s two-hour long narrative, his wife cut in to ask, “Can I interrupt, briefly? When he’s wrong, do you want to know that or not?” TBI in this case is performed as the lack of competence in delivering even a personal narrative, a performance backed up by popular conceptions of head injuries from football players (Landesman 2015) and even Arizona Congresswoman Gabrielle

Giffords. They perform life “with TBI” through occasional and momentary mistakes that others would not make. Moreover, survivors themselves do not always make the same mistakes, as the bodily effects of their injuries shift and change throughout survivors’ lives. Examples of these failures include confusing details in a story, reacting out of step with others, or not being able to perform what are considered “normal” duties. Having witnessed these mistakes on numerous occasions, survivors’ significant others treat them as if they would always make similar mistakes, circumventing the possibility that they might not. The TBI that James and his wife live with, as it emerged from this and many similar interactions, is not a positive life constituted by meaningful relationships and accomplishments. It is the lack of these things and a life of isolation and disappointment but also love and companionship in the face of hardship, as they live with a disability that they both perform.

From both a Goffmanian and a Butlerian sense, then, living “with TBI” is not just a bodily condition, it is a way of acting and performing in the world. It is not something that TBI survivors embody, but something that exists in the interactions that survivors

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and those around them have. It is a thing of social drama and performance, norms and failures to uphold those norms. Its dynamism is a fitting counterpart to the particular stories and the broad set impairments that are classed under the same name. As such, though it may spring from survivors’ original head injuries, this TBI only later emerges from and within social and physical environments, depending on the actions and interactions of survivors and their significant others.

The Disability of TBI

As I have tried to show through my analysis in this chapter, a case can clearly be made for the daily and lived experience of TBI, what I have been calling life “with TBI”, as both embodied on the one hand and performed. on the other. But these two broad theoretical approaches to social life are often at odds with one another. However, I propose as a solution assessing them from a different angle, that of the relatively young critical and humanistic discipline of Disability Studies (DS). DS stitches these two approaches work together, and its framework allows all disabilities to have both embodied and performative aspects. When regarded as a life of disability, life “with TBI” can be both bodily experience and social drama at the same time. In this section, I want to reexamine through a DS lens. TBI thus refigured is not the injury, methodology, or narratives presented in previous chapters, nor is it the embodied experience or social drama discussed in this chapter. Instead I propose to view the acronym as distinct kind of disability, tracing the ways in which it resides in families and individual brains and bodies. When TBI is reframed specifically as a disability, the claim of numerous

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survivor-informants, their significant others, and even policymakers and NGO staff, “TBI happens to the whole family,” begins to make sense.

Traditionally, DS scholarship has centered on the dialectic between bodily impairment and socially-enacted disability (Davis 2017). This rigid framework conceives of disability as a social construction realized in the lack of fit between bodies with certain bodily capacities or impairments on the one hand, and the social and built environments through which they move on the other (Stiker 1980, Shakespeare 2017, Rattray 2008).

Impairments thus conceived are natural ways of being in the world that only become disabilities when other people actively make them so. Disability Studies thus reframes what had been understood solely as bodily misfortune into a socially engaged discourse of inequality brought about by society, its policies, and those who devise, implement, and uphold them (Charlton 1988, Goodley et al 2012).29 It is built on the social movements that inspired its creation, taking a more active and engaged stance that is deliberately designed to encourage specific policy changes and empowerment of the disabled (Pfeiffer

1993, Kafer 2013). The new discipline, arising from the lives and experiences of activists with mobility disabilities like paraplegia and post-polio or sensory disabilities like deafness and blindness in the 1970s and ‘80s in places like London and San Francisco, was remarkably successful at promoting significant change for people with those disabilities (Blackmore and Hodgkins 2012). 30

29 Many scholars in contemporary Disability Studies do not hold this simplistic and traditional framing of disability, and most insist that because the original “Social Model” of disability was primarily an activist and engaged discipline, it did not take the nuance of all possible disabilities into account (see Siebers 2008 and Shakespeare 2014 for key examples). 30 These policy changes include the landmark Americans with Disabilities Act and the International Classification of Functioning, Disability, and Health over the past 30 years, but these were either immediately walked back by future amendments or were not enforceable and thus their impact has been limited from their original scope.

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More contemporary DS theorists take issue with the assumed contrast between disability and impairment.. Patterson and Hughes (1999), following Butler’s (1993) refutation of the sex/gender dichotomy, insist that DS did not go far enough in breaking down disability’s problematic social construction. They insist that impairment is also socially constructed. Some types of bodily impairment are not defined as such but are instead included within ideals of the normal body. Myopia is one very common example of this, where near-sightedness is not considered aberrant but normal, for which there are readily available solutions such as corrective lenses or Lasik surgery. On the other hand, impairments such as epilepsy are held by society as an abnormal misfortune (Ablon

2002). As such, for the surrounding ableist society, differences that rise to the level of disabilities are reasons for sorrow, pity, and charity (Kasnitz 2020)31, even as those who experience more normalized impairments are not assumed to be discontented just because they have to wear glasses or cannot differentiate between red and green.

The traditional DS framework is not an open enough construction to include all possible disabilities. It does not account for experiences of debility, in which certain social and physical constructions may not fully bar access to spaces and activities but instead renders it much more difficult (Puar 2017). Nor does traditional DS provide a space for complex, shifting, and largely invisible impairments such as those that can follow a moderate-severe TBIs,32 similar neurological conditions like autism (Ortega

2009, Downey and Lende 2012), or such chronic illnesses as Multiple Sclerosis,

31 The vast majority of the disabled, including me, disagree with this sentiment (see Charleton 1988, Siebers 2008, Kafer 2013). It is demonstrably contradicted by those of the vast majority of the disabled, who are as happy and contented or displeased and frustrated with their lives as others (Davis 2017). To insist that we should have more reason than others to be unhappy or depressed is clearly at odds with the reality, as has been argued by numerous DS scholars since the discipline’s inception (see Stiker 1997, Siebers 2008, and Kasnitz 2020 for a small number of scholars who have made this claim over the years). 32 For another example of how “invisible” disability operates in the US, see E. Samuels (2017).

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HIV/AIDS, and fibromyalgia, among others (Wendell 2017). Consequently, those who live “with TBI” and similar conditions lead lives that many not look anything like those of other disabled persons. Given the variability and diverse nature of their sequelae, these conditions may not block access to public spaces and activities. Thus, although TBI is recognized in federal law as a disability, it is not and should not be understood as a disability within the traditional DS framework.

In my own case, this more traditional perspective does not allow for my federally- recognized disability and the legal accommodations it requires. In one painful example from my graduate career, when I was struggling with my studies due to my TBI-related cognitive impairments, I sought the help of Disability Services on campus. When I gave a brief narration of my life “with TBI” and my accommodation needs, a more traditionally- minded Disability Studies scholar and administrator once told me with casual and hurtful disregard, “You do not have a disability; you only have an impairment.” As it was only an impairment, from the scholar’s theoretical perspective, my TBI did not fall within the purview of Disability Studies, Disability Services, or Lawful Accommodation. I thus had no right to university-sanctioned accommodations and would have to negotiate with my department every time my TBI threatened to harm my studies. Trying to manage my own particular impairments, my story, and my life “with TBI” as both an embodied and enacted disability that was unaccommodated, I quickly became so overwhelmed by graduate school that I had to take a semester of medical leave—which, as mentioned in

Chapter 2, resulted in this study.

The situations of myself and many of my survivor-informants is instead analogous to the disability experience of the late Tobin Siebers, a more contemporary DS

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scholar and literary critic. Siebers, a survivor of childhood polio, was able to walk for short distances with little more than a cane. Ordinarily, this did not create great obstacles for the academic, as he was able to get around using minimal supports. However, Siebers could not use his cane in every situation, such as when boarding airplanes (Siebers 2004).

He had found from experience that boarding with other passengers did not give him enough time or energy to make his way independently down the gangplank, find his seat, place his carry-on luggage in overhead storage, and get seated quickly and securely. In response, he would request to board early. But when he would approach the gangplank after the early boarding call had gone out with only his cane, he had been asked to sit back down and wait for general boarding. It was as if because he did not function or perform as airline staff expected of their disabled passengers, echoing Butler’s conceptions of gender norms, he could not have a disability. In response, Siebers would exaggerate his impairments or exclusively use mobility aids at the airport. By doing so, he effectively performed what most people defined as “disabled”—using mobility aids— and was assured of being allowed to board early. Yet this action in turn limited his access to certain spaces that are not equipped with accessible features. The performance, itself a response to others’ responses to him, effectively creates a full disability, in terms of inaccessibility, where there would otherwise be a debility.

Like Siebers, my survivor-informants Eric and Savannah both live with mobility impairments that limit access to certain spaces, such as those barring wheelchair access or requiring long walks. Others like Charles and Cheyenne have issues with vision and hearing that limit their access to certain physical and social environments. And while

Charles and Cheyenne organize their lives around their head injury-related impairments,

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Eric and Savannah’s daily lives are not. Certainly Eric would prefer to be able to stand and walk unaided, as he continues working on new techniques offered by NGOs such as

BrainDance to achieve this. But his daily life is not defined by either his mobility impairment or the lack of access that society imposes on wheelchair users like him.

Likewise, Savannah’s biggest concerns are not that she cannot visit her friends more regularly or get herself to and from work independently. For that, her parents and friends help her out. Nor do they live with problems of physical access as their major or even significant concerns—at least, not as I learned when interviewing and observing them.

Moreover, Olivia, Terry, and Sarah do not have any impairments that restrict their access to spaces and activities. Nor do I, as neither my double vision nor my ataxic gait restrict my abilities to drive, walk, or get around under most circumstances. Yet we each require certain small assistances and accommodations in our daily lives to get by. Though we may not be sick or ill, we live lives that are exactly analogous to Wahlberg’s (2018) concept of “morbid living”. We have found ways to “rehabituate” ourselves to our impairments (Manderson 2011) but we still require small or large assistances from others so that our disabilities do not become more disabling, just as Siebers did when boarding airplanes.

Other recent works in the discipline identify how some disabilities and disability experiences are complex in multiple ways. Feminist disability scholars for example note how impairment and disability are always tied up with gender, race, class, and other factors (Garland-Thomson 2011, E. Samuels 2014, Hall 2011, Kafer 2013). Disability, they argue, can never be fully identified or understood without also considering these intersectional entanglements (Erevelles and Mindear 2017). For Wendell (2017) and

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Casper and Morrison (2013), complex and variable disabilities like TBI are misunderstood because they do not fit within standard conceptions of disability. For other contemporary Disability Studies scholars, disability arises in the interplay between the two sides of the traditional dichotomy, as disabled individuals and those around them must manage their impairments and request accommodation from a society that is rarely universally designed for them (Shakespeare 2014), all while managing other identity factors that intersect with and complicate their lives (Erevelles and Mindear 2017, E.

Samuels 2017).

Siebers (2008) notes that in some cases, bodily impairments can themselves pose problems in addition to the barriers to access society imposes on those who embody them. As he argues, disability can be more complex than earlier conceptions of embodiment, performance, or DS allow for (Siebers 2006). In attempting to resolve this issue with his theory of “complex embodiment,” he cites a recently identified disability, one that biomedical officials continue to dispute as an example: chronic pain. As he remarks glibly but without sarcasm or irony, chronic pain hurts (Siebers 2006, emphasis added). Chronic pain ultimately becomes a disability not because society hampers the access of those with chronic pain to various settings and activities but because those with chronic pain require certain accommodations at certain times, depending on when their pain flares up and becomes unmanageable. When they do not receive these accommodations, their impairments can be prolonged or increased, increasing their disability. Complex embodiment thus dwells neither in bodily impairment nor socially- created problems with access but in the complex interplay of the two (Siebers 2017). In this conception, disability is not limited to physical impairments, but to any condition

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that, through complex embodiment, affects participation in the world, including mental illnesses and other conditions that can share symptoms with TBI.

Extending this idea of complex embodiment to my own and my survivor- informants, our lives “with TBI” are not exclusively bodily impairments or imposed limitations of access. They can be either, or neither, or both, depending on the time and circumstances. Moreover, like Siebers’ own experience following his childhood polio, the broader meaning of TBI that I am discussing in this chapter tacks back and forth between all of these options in a constant and complex movement that heightens or diminishes the disability of TBI from situation to situation and social context to social context. Frank, for example, does not have explicit mobility or sensory impairments, nor does he have intellectual impairments that impact his daily life. Yet he is unable to work successfully, as has been backed up by court cases and medical documentation. Like many survivors, his impairments are not static and can appear at any time, especially when he is tired or when he attempts to take on several tasks at once. It is only when his mother or others help him take care of the “little things” in his life that he is able to devote himself to any single task.

TBI can function much like Siebers’ post-polio did. It is not always noticeable and many survivors, such as myself, are often denied accommodations because we do not fit with what others think of as “disabled.” We do not fit with normative conceptions of disability and the disabled, nor do our impairments always manifest themselves in our lives in the same way. This potential for confusion is magnified, as many survivors cannot perform their disability the way that Siebers does. Faye, for example, does not appear at first glance to have a disability. Like many of us, however, she has numerous

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bodily scars that give evidence of a head injury. She does not grow hair out of the part of her head where her skull was removed to minimize the effects of her post-injury cerebral edema. She chooses to keep these bodily signs hidden, however, as she has found this the best way to get along with those with whom she interacts. In her words, “Because I don’t not hold my head to the side and drool, because I can form a complete sentence, they think I’m fine.” Simply, Faye’s conduct is not like what is generally considered disabled, and like Siebers, she has been refused needed accommodations.

When Faye attempted to return to work a few months before I first interviewed her, she was taken advantage of by her employer in a way that perfectly describes

Siebers’ theory. Despite Faye’s requesting a position with peace and quiet, as she does not fare well in loud and over-stimulated environments, she was required to work long hours in an overcrowded kennel that was filled with numerous barking and threatening dogs:

Despite the fact that they knew I was barely good for six, even though I would work full time to make my wage, I wasn’t up for fourteen-hour days with barking dogs and taking in, dogs bigger than myself, and wild dogs ungroomed dogs untrained dogs savage dogs—they called ‘em ‘red dogs’. One of my first jobs was to walk one of the red dogs named Bozo. Looked like Spuds McKenzie. And the minute I got it out the door with the collar that they gave me it slipped out the collar and ran off into the main thoroughfare in that neighborhood of Seattle! Thank god I’d had the sense to make friends with the dog and put some dog biscuits in my pocket. I got the dog back into the harness and brought it inside and I thought ‘OK this is it for me’—and this is two hours into my first day! I worked there for 2 months and things never got better. They made me mop the slippery floors even though I knew I couldn’t stand up she knew my disability she knew I was scared of the dogs—I quit once for three days! I quit and said “Listen you can’t put 24 dogs behind me. I’m blind on the back side. I have no peripheral vision. And she kept saying to me, “You don’t have a brain injury. I think you’re really intelligent.”…They still cannot believe I have a brain injury because I can form a complete sentence and I can walk a straight line, some days. There are some days, where I cannot form a sentence like this, I cannot walk a straight line, I do not leave my home and I do not leave my [medical support] dog by more than two inches. But they don’t see that part! Just because they don’t see that part—I don’t let ‘em see that part.

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The disability of TBI that this story contains can be found in both the effects of Faye’s bodily impairments and in certain significant others’ understandings and construction of those impairments as worthy of accommodation or not. She told her boss about her TBI and her difficulties reacting quickly or well to situations of high stress and high stimulation. But because Faye did not act as her boss expected a disabled person to, she was given more responsibilities than she could handle. The situation did not resolve until she became so overwhelmed with the noise, commotion, and stress that she walked out the door one day and never came back.

Others’ lives “with TBI” are similarly complexly embodied, as their TBIs impact their lives in ways that always depend upon the relations and interactions they have with their significant others. Thomas, for example, lives with a brace that affects his movement, but it rarely serves as a barrier to his access to physical or social spaces. It becomes one when he is among those who refuse to move at his speed. He mentions how this can affect his mood, which in turn can heighten other effects of his TBI, barring him from still other situation, such as when his coworkers invite him out after work. Both he and his mother feel that he could live on his own, given certain disability accommodations that adapt to this and other of his shifting impairments and needs. In his life today, these accommodations are provided by his mother, who prepares most of his food, handles quotidian purchases like food and household supplies, and helps him remember his medical and other appointments. In Thomas’s case, his impairments are not necessarily created by society but are held at bay by the personal accommodations he receives from his family, and to a lesser extent his friends. If he did not have these significant others in his life or they did not treat him in this way, his various bodily

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impairments were much more disabling, in a way that would feedback into his social relations, in turn heightening his disability.

Olivia is not legally allowed to work and needs Oliver to pay for her daily cost of living. He refuses to accept that her TBI keeps her from being able to work, however, insisting that she reenter the workforce without any accommodations and begin paying her share of their rent, utilities, and food. Because of this, and at the urging of my key informant and other survivors that she knew, Olivia applied for and was accepted at a local community college’s program in physical fitness training. Yet before she could even complete her first semester, Oliver booked them a trip to Paris. He insisted that she arrange with her school to take a leave of absence. Her instructors refused to grant her one, however, warning her that she would fail the class if she left. Oliver then threatened to go without her, and in her fear of their relationship crumbling further, she went with him. She enjoyed the trip, showing me several pictures of her and her husband smiling in front of famous landmarks during their trip. However, as they were flying over the

Atlantic on their way back to the US, Olivia discovered that she had left the laptop on which she had been developing her final presentation at the airport gate. She would have to start her final presentation all over again, a day before it was due.

Olivia bought an expensive new computer as soon as she could, further enraging

Oliver. In response, he refused to help her on her assignment, despite her having difficulty working with computers following her injury. She had only managed to complete and pass her midterm assignment for the class with Oliver’s help, and thus had not learned how to use software for the presentation herself. When I last met with her at her school, she had just given her presentation, which she described as haphazardly done.

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It had passed but was not enough to regain Olivia the points she had lost when travelling, and she received a failing grade in the class just before I left the field. Olivia and her husband had already paid for her next term’s classes, some of which required a passing grade from the class that she had failed, however, and she would no longer be allowed to register for them. Yet she was not concerned about this when we met. Instead, she was worried about how her relationship with Oliver had continued to deteriorate during the prior weeks such that he did not help her with her final project, and what she would do if he did ask her for a divorce. Would she have to find a new apartment or would she have to leave the country? These were just a few of the concerns she mentioned during our final meetings.

From a traditional standpoint, Olivia is not disabled. She is able to access and pursue many different activities that those with mobility or sensory impairments are not: she travelled by herself to her home country to care for her dying sister and reconnect with her family there; she enrolled in college classes at a local community college; she travelled to Paris with her husband. Yet her current life is far from the one she desires or identifies with. This is both because of the restriction her doctors put on her nursing license—a kind of access restriction—and because she does not have the kinds of relationship with her significant other that could facilitate her successfully beginning a new career as a fitness trainer. Olivia’s disability arises precisely when her impairments and her relations with her husband interact. It results in a life where she is unable to live the life wants and is precariously close to losing her marriage and being forced out of the country. For her, her TBI-related impairments—which are many—only truly becomes disabling through interaction with her significant other.

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Tetherball

Living “with TBI” is thus complexly embodied in ways that both survivors and their significant others come to embody and perform in their daily lives. For some survivors, their significant others’ intervention and assistance help them to live their lives as they choose, regardless of their particular embodiment of their injuries. In their fortunate cases, complex embodiment can actually resolve any debility or access limitations they face. For those without significant others, or whose significant others refuse to help them in the right times and ways, however, complex embodiment can exacerbate and even constitute the problems they face in their daily lives. It is not the embodied results of TBI that are disabling, but how significant others help survivors to minimize or aggrandize the impact of their impairments in their lives.

In Olivia’s case and in many others’, living “with TBI” only becomes disabling in the interplay between impairments and interactions with significant others. These problems in turn restrict survivors’ access to locations and events. But they do not do so in a permanent or static way. Rather, they largely depend on the kinds of personal accommodations survivors receive from their significant others. These accommodations may be provided at the whim of others’ estimations and respect for survivors needs for assistance, which are often contested. I refer to ongoing negotiations around accommodations as “tetherball.” In the children’s game of tetherball, an inflated ball is attached to a rope and tethered to the top of a tall pole so that it hangs at about waist- height for most children of grade school age. Contestants arrange themselves on either side of the pole and attempt to hit the ball so that it swings around the pole just out of the other player’s reach, returning to them with a slightly shorter length as it has wrapped

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itself around the pole one time. The goal of the game is to wrap the ball entirely around the pole such that the other player cannot hit it anymore. The player who accomplishes this wins, they let the ball unwrap from the pole, and can play again at that moment or later in the future. In TBI-tetherball, the contestants struggle to define the connection between the survivor’s head injury and their right to assistance and accommodation. In other words, they contest that the justification of the survivor’s request for help, what the survivor calls their TBI, is actually connected—or, using the analogy I developed in the last chapter, “tethered”—to the injury to which the acronym originally refers. Whichever side wins gets to establish how the survivor’s lives “with TBI” and their requests for understanding, accommodation, or assistance, are understood to naturally and justifiably derive from their head injuries. Survivors’ significant others then provide or withhold the requested help or empathy based on the results of the match. However, at the conclusion of the children’s game, the ball simply unwinds and the contestants can and often do immediately play again. The same may be true in my informants’ lives, as well. TBI- tetherball matches may never be fully settled, and the winner of any individual skirmish will find their position contested again in the near future. This is clearly the case with

Olivia and her husband, as tetherball has become the focus of their relationship. In similar cases, tetherball matches can themselves have significant impact on the competitors, further reinforcing and even causing some of my survivor-informants’ TBI-related impairments.

For many of the cases I studied, survivors and their significant others have a largely shared understanding of the accommodations they require to go about their daily lives without significant problems. Survivors’ significant others provide these small bits

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of help or allowance without much fuss or fight and may even do so without the survivor’s request. Eric’s mom, for example, handles his schedule such that she knows to take time off work to escort him to his day center or events with local brain injury- organizations around the city. His “dancing instructor” helps accommodate him as a dancing partner so that he can stand and even walk without his walker or his wheelchair.

Sarah’s “army of cousins” knows when she needs help getting to the grocery store, her medical appointments, or just wants to meet to have coffee, and make themselves available without much fuss. Her husband knows when she needs her sleep and wakes up in the middle of the night to feed their newborn to facilitate her continued rest. Thomas and Frank both live with their mothers who help them with more quotidian matters that they are not able to focus on like buying groceries, preparing food, or getting rides to certain locations.

Some, like Terry and his significant others, rarely play tetherball, and when they do, the game is more of a farce or shadow play than an actual struggle. During our final session together, Terry told me of how his family members claimed victory in one such tetherball match. Just after dinner, when Terry attempted to justify forgetting a family member’s name with reference to his TBI, his sister jokingly told him, “You can’t use your TBI as an excuse anymore!” The implication, Terry told me, was that she knew from experience of the role that Terry’s TBI could play in their interactions. She was

“wise,” as he put it, to his facetious attempt to invoke it, suggesting a shared understanding of how Terry’s head injury affected his interactions with his family. Terry and his father, both of whom I interviewed after this event, both spoke about the joke during our conversation, using it to discuss how they continued to live “with TBI.” Yet,

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as Terry’s girlfriend later told me, specific members of Terry’s family do help him accommodate his remaining impairments without mentioning it. The joke thus was a kind of Geertzian wink (1959), a signaling between family members about their shared understanding of Terry’s story, of his rare needs for assistance and accommodation, and thus the shared nature of all of their lives “with TBI.”33

Savannah and her significant others (her parents) have the opposite problem. They do not speak often about Savannah’s injury or her life “with TBI” but watch over her closely. Sometimes, she often chafes at the protective relationship. Their treatment of her and her TBI is often overbearing, as she confided to me during our final session when her mother and father were out of hearing. Savannah does not fret much about her social isolation, about which her mother worries, her mobility impairments and transportation needs, about which her father worries, and instead her parents’ concerns drive a treatment that Savannah occasionally finds annoying. The tetherball match in this case is one that none of the players fully understand or acknowledge they are playing. In their case, the contest is over how prominent her parents’ place in her life will be. Everyone agrees that

Savannah will probably need to live with them for the foreseeable future as she has limited mobility, cognition and attention, and can be made fun of or taken advantage by coworkers at the local pizzeria where she folds boxes for a few hours per week. She does not seem to mind, but it is clear that she is not terribly happy or comfortable in her current work, nor does she know how she would be able to get by on her own—of which

33 Geertz (1973) further develops this notion with a famous account of a failed sheep raid in the Atlas Mountains of Morocco. In this case, the raid may have appeared violent and aggressive—it convinced the colonial authorities, at least—but the aggression was facetious. It was meant to secure relations between families in the area. When the colonial authorities put a stop to the practice, it disrupted the long-standing inter-familial, religious, and political balance in the area, leading to actual violence that the earlier practices had served to avert.

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her parents are well aware, as they both confided in me during their interviews. They want their daughter to be able to become more independent, but they also want to protect her from those who do not understand Savannah’s condition and will mistreat her as a result. Their tetherball match is largely hidden, as her mother tries to constrain and limit

Savannah’s social and work life while she herself tries to be more independent.

And finally, there are some, like Faye, whose tetherball match is both overt and furious. Faye has a medical support dog and visibly dented skull that she sometimes points to as a literal proof of her tether to her disability, particularly with family members with whom she has a contentious relationship. Faye’s chronically ill and home-bound mother-in-law, Frida, insists that her daughter-in-law stop invoking her disability as an explanation for her days-long migraines, frequent fatigue, or her multiple sensory impairments. At one point, Frida asked Faye, “Do you really have a TBI or did you just run out of attention?” The older woman refuses to believe in the physical reality of

Faye’s impairments despite seeing their effects on her daughter-in-law every day. Frida insists that her daughter-in-law devote most of her day to keeping Frida fed and her house cleaned. She also seems to demand that Faye should serve as surrogate mother for Frida’s granddaughter when the teenager ran away from her home and moved in with her grandmother. Faye, having long dealt with physical and emotional abuse as a child, acquiesces to the older woman without much comment. Yet the two still fight over the bodily reality of Faye’s complaints, and the tetherball match was unresolved at the time that I left the field.

For most of my survivor-informants, fighting and negotiating with their significant others over what constitutes their “TBI”s, what should be accommodated, and

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whether they are faking, malingering, or exaggerating is itself a large part of their daily experiences. They and their significant others do not just play tetherball; they live it. And, though this is not the entirety of the disabling effects of TBI, in some extreme cases like

Faye’s and Olivia’s it constitutes and causes the majority of these effects. Faye only emerged from her isolation at home to participate in my research. She was so beleaguered by her constant tetherball matches with her mother-in-law that she regarded even that as a major achievement. For Savannah and a number of others, their tetherball may be a source of tension but it is not severely disabling. In Savannah’s case, her parents understand that they must drive her to and pick her up from her activities. The only real tetherball the play has to do with more minor accommodations. They do not constitute major sources of disability, though they might in the future as Savannah’s parents get older and may need assistance themselves. For Terry and a lucky few like him, the tetherball match has already been decided and major skirmishes no longer occur. Not only does he not need to worry about convincing his significant others of his needs for accommodation, but they take care of these needs without his full awareness. Terry, unsurprisingly, lives almost untouched by disability.

Conclusion

In the cases I discussed above, my survivors-informants’ diverse embodied experiences, performances, and relationships with their significant others each come to constitute the disabling effects—or lack thereof—of their lives “with TBI.” I do not mean by this to deny the very real disabilities to which their diverse individual impairments may be connected, such as Eric’s inability to walk unaided, Savannah’s problems with

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short-term memory and attention, Sarah’s migraines and fatigue, and countless others.

Instead, I indicate the unique disability experience that is specific to TBI, one that is grounded in the framework of disability studies disability and Siebers’s theory of complex embodiment. From this perspective, survivors’ significant others can mitigate or exacerbate the effects of their impairments. Moreover, those effects are not survivors’ alone, and their significant others often experience and even come to live “with TBI” and embody its effects, as well.

The experience of what I am calling the disability of TBI is thus distinct from the event of the injury that the acronym literally describes and the variety of impairments and effects such an injury can cause. It is again different from the narratives survivors and their significant others tell about their injuries, though in their narratives are built on and attempt to represent their lived experiences. Like their narratives, survivors’ experiences—especially the experiences that lead them to request personal assistance or accommodation from their significant others—are deliberately tethered to the acronym in social interactions. In these cases, as I will discuss in later chapters, survivors’ lives “with

TBI” are embodied, performed, and complexly embodied in a feedback loop that can have drastic bodily and social consequences. These are the focus of the next part of my dissertation.

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Part 2: Social Constructions of TBI

Part 2 takes a significant departure from the more individual meanings of TBI that were the focus of Part 1. I now examine TBI as it is taken up, re-constructed, and gains new meaning in social environments beyond particular stories and individual lives. The acronym that appears in these contexts is a purely social object, created in and supported by organizations. Like all of TBI’s meanings that I cover in this dissertation, the acronym remain tethered to the original concept of head injury that grants it its name. But it also spreads far beyond it. TBI comes to encompass the activities of civil servants and NGO staff, along with laws and services. It is the stuff of politics and policies, community organizations and support groups. The distinctly social meanings produced in these settings may have the least direct connection to TBI’s original meaning, but they also have potentially the largest impact on head injury survivors, those closest to them, and their surrounding communities.

The two social constructions of TBI that I discuss in the chapters that follow are distinct from each other. They also mingle and intersect, helping to constitute each other at one moment and then disagreeing with or contradicting each other the next. Their conflicts and concordances leave marks on the social terrain of the city, with potentially enormous impacts on survivors, indirectly threatening their well-being and even lives.

They draw survivors together to learn from and help each other. Yet they may also separate and further isolate others, muddying the waters through which they must navigate to survive.

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Ultimately, these two most social meanings of TBI renew and deepen the complex embodiment I described in the last chapter, adding new layers to the embodied experience and personal constructions of TBI produced by individual survivors and their significant others. In the chapters that follow, I tie these social meanings of the acronym to the negative social outcomes public health studies consistently associate with it, such as poverty, social isolation, homelessness, and suicide. At the same time, the second of these meanings, community, is celebrated by many—though not all—as a potential solution to these crises. Through it, TBI gets enfolded within the larger and inclusive

Brain Injury Community, losing some of the specificity and particularity of survivors’ lives and narratives. As with all the elements of the Social Life of TBI that I have laid out in this dissertation, this “solution” is ambiguous and multiple, helping some survivors to navigate through the turbulent seas of TBI’s Body Politic in Seattle while abandoning others to drown. Finally, I conclude by tethering the meanings of TBI that I present in this dissertation together, despite their difference. Together, in their contradictions and agreements, they bring the Social Life of TBI, in all its multiple and ambiguous reality, to life.

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Chapter 5 “It’s like a ‘Wild West’”: Governing TBI Through a Policy of Precarity

Introduction: The Stymied Initiative and the Policy of Precarity in Seattle

On May 16, of 2018, the new progressive mayor of Seattle, Jenny Durkan, signed into law a novel initiative to address the recent and rapid increase in homelessness, which had recently become the third highest in the nation (Walters 2018). Based on the recommendation of an official city Task Force created six months earlier, the law set small per-employee fees on the few companies housed in the city with annual revenues over $75 million. The fund gathered through this initiative would all go to a new city task force whose sole purpose would be to devise, propose, and implement novel policies to combatting the city’s skyrocketing homelessness rate. In effect, this “Employee Hours

Tax” (EHT), would only apply to Amazon, Starbucks, Boeing and a few other very large companies that were based in or had sizeable offices in the city. Mayor Durkan and the

Task Force saw the rapid growth of these businesses as the primary reason for dwindling housing supply and constantly increasing rent prices citywide. This “tight” and increasingly unaffordable housing market resulted in thousands of city residents losing their rental leases (Samuels 2018). According to the logic of the EHT, these individuals would then spend much of their time searching for increasingly scarce affordable housing inside the city. While searching, they would have to find more informal lodging: staying with friends and families, living out of a local hotel, sleeping in their personal vehicle, or joining the city’s rapidly increasing informal homeless “camps” in parks and on city

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sidewalks (The Seattle Times 2018). If they did not find anything, they would have to look outside the city, requiring hours of travel time and expense that they may no longer be able to afford.

Seattle’s major corporations and many of its wealthy elites argued that the new policy was unlawful and threatened what they saw as fairly earned corporate successes. A group calling itself “No Tax on Jobs” formed to sponsor numerous newspaper, radio, and

TV ads attacking the initiative. The group claimed that the EHT would “force” profitable companies to abandon the city, harming the city’s economy without addressing the root causes of the crisis, which both parties agreed was a lack of affordable housing (Samuels

2018). The initiative, these opponents argued, would result in an increase in the city’s homeless population (Beekman 2018).

Both sides in this debate staged public relations campaigns in the following months to argue their positions. They wanted to convince members of the public to join their sides as a way to pressure the City Council to respectively vote for or against the bill. The resulting media fight grew increasingly heated as spring progressed to summer, and eventually came to appear both physically and socially in my neighborhood.

Opponents to the initiative set up shop just across the street from my apartment building, outside a mid-range grocery store. All day long throughout June and July, a rotation of two individuals—always white retirees, from what I observed—sat at a large table full of pamphlets and fliers arguing against the EHT. The summer days were long, sunny, and warm, and the opposition’s table was set underneath both an awning and an umbrella to keep the older pamphleteers shaded from the long hours of constant sunlight.

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Meanwhile, the opposing side argued its case outside a more affordable grocery store a few blocks down the hill, nearer to public housing and office buildings. Only one representative of this side was ever present, with neither table nor umbrella. The only representative I ever saw was a young man of color in simple t-shirt and blue jeans, who handed out single sheets of paper with information and graphics in support of the program. The clientele at the store was younger and the groceries more affordable than up the hill, so the discrepancy in representatives made sense. But the difference between the two sides’ public campaigns were noticeable, and it presents a clear illustration of the overall debate then raging in the city. Ultimately, the pressure campaign against the EHT worked, and the mayor rescinded the bill a few weeks after it was first passed into law, leaving poorer residents precariously close to homelessness (Balk 2019).

The debate over the EHT touches on what scholars have named “precarity” in recent years. The concept precarity encompasses the temporary and tenuous nature of contemporary employment and the resulting financial insecurity (Thorkelson 2016). It also describes the state of perpetually living on the edge of such forms uncertainty as national security, health, housing, and the like (Butler 2004, 2009). Using Foucault’s ideas about how power is productive, precarity scholars show how the neoliberal state produces a new kind of citizen-subject (Cruikshank 1999), one who lives precariously balanced at the edge of losing their employment, well-being, citizenship, or even lives

(Butler 2009, Lorey 2015). Medical anthropologists Das and Randeria (2015) co-edited a special issue of Current Anthropology wherein each of the contributing scholars describe similar situations around the world. For them, “the socialities that undergird the lives of the poor are constantly being shaped by the experiences of precarity that go beyond

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material scarcity (S3),” including physical, economic, social, and even spiritual concerns.

Moreover, as many European scholars analyzing the Euro MayDay protests indicate, the neoliberal state controls its population through a process of “precarization” (Lorey 2015).

Citizen-subjects in this condition are not necessarily impoverished but risk falling into poverty. They spend their time and energy maintaining their precarious livelihoods instead of organizing with others to improve their situation cooperatively and thereby introducing a new political and social order (Puar et al 2012). Butler (2009) points out that the precarized citizen-subject lives, “or tries to live, on the far side of intelligibility,” thus inspiring new possibilities for organizing and living that transgress neoliberal norms

(Lorey 2015, Puar et al 2012). In the US, government programs like Medicaid, Social

Security Disability Insurance (SSDI), and Supplemental Security Income (SSI) function similarly in that they do not allow individuals to maintain anything but the lowest standard of living (Butler and Engel 2008, Puar et al 2012). Many of my survivor- informants who subsist on these programs remarked that they would not allow them to remain in Seattle for long, however. Echoing this sentiment, local news coverage as well as many friends in the city remarked that the rising cost of housing and lack of government action to contain it likely contributed to the rise in homelessness in the city

(Walters 2018). 2018’s back-and-forth on the EHT was part and parcel of the process by which government, wittingly or unwittingly, kept the less fortunate in a position of precarious housing.

The subject of homelessness was a regular topic of discussion at the brain injury support groups I observed while the above dispute raged. Multiple members had been homeless in the recent past, several more were at risk of becoming homeless in the near

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future, and all were aware of the many troubling reports that well over half of all homeless adults in major cities were themselves TBI survivors (CDC 2015, Gainer 2018,

Lafferty 2010, Oddy et al 2012). At group members’ urging, I stopped to speak to proponents of both sides of the EHT debate, informing them of the intersection between their concerns and my research. Each side had different though equally dismissive reactions. The initiative’s opponents responded to my comments with almost polite disinterest. They insisted that the Mayor’s initiative would be “bad for everyone,” regardless of ability, class, race, health, or other factors. The initiative’s sole proponent spoke to me much more agreeably but abruptly. He said that the co-incidence was worth noting but quickly cut off our conversation so that he could hand out fliers to the many other customers walking out of the store. Because both he and I agreed about the mayor’s initiative, I let him be and continued back up the hill to my apartment.

These interactions illustrate how TBI and TBI survivors are both implicated in and left out of the political worlds that surround them. They serve as a metaphor for the ways in which survivors are treated, as I approached both camps with very real concerns about the impact the EHT could have on TBI survivors in the city yet was politely dismissed and ignored each time. In this chapter I will explore such connections further, identifying how TBI becomes a concern of contemporary neoliberal governance, public policy, and community programming. I also trace the ways this political construction both responds to and constructs TBI as an object that coincides with such seemingly unrelated social issues as homelessness in a rapidly developing city like Seattle. With limited public awareness of the acronym, the dramatic co-incidences of TBI, homelessness, poverty, and other social problems are largely unnoticed by the majority of

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the public, even when they may associate these problems with disability in general. The policies and programs proposed to address TBI are usually implemented in response to the efforts of the individuals or groups that already have some sort of relation to TBI: survivors themselves, their significant others, or already established organizations looking for more funding opportunities. Each operate with different and sometimes opposing conceptions of what TBI means and their efforts are rarely coordinated or harmonious. The resulting lack of consensus minimizes the impact of their efforts at increasing public awareness and countering the concrete problems and precarious situations faced by survivors.

This chapter serves as a call for further research and applied studies working hand in hand to address what is in many cases a life and death struggle that goes entirely under the radar. It locates this struggle in the “body politic” of TBI Seattle, following Scheper-

Hughes and Lock (1987) for a third and final time. It judges how that body politic leaves many survivors in a state of precarity and uncertainty that consumes their energy and attention and constrains their social, economic, and political lives. Below, I flesh out the body politic of TBI by examining it in relation to state policies, laws, and organizations,

NGO programs, policies and services, and finally the lives of survivors and their significant others. The chapter uses my ethnographic data to identify the links between

TBI and the social problems like homelessness that threaten the well-being of many of my informants. Though the subject deserves much greater attention than I am able to give it here, I hope to lay the groundwork for future studies that might sort out the disorganized amalgam of policies, organizations, and actors that one formerly homeless informant referred to as “like a ‘Wild West’.”

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Researching TBI’s Body Politic in a Rapidly Developing City

What I call the “body politic of TBI” in this chapter is not a traditional understanding of the “body politic” as the body of citizens in a democratic polity. Instead,

I draw upon work in neoliberal and biopolitical governance that identifies the workings of governance in and through individual bodies and their comportment (Foucault 2008,

Cruikshank 1999, Mitchel and Snyder 2015), incorporating it with contemporary anthropological approaches to policy (Bear and Mathur 2015, Bernstein and Razon 2019,

Lorey 2015, Wright 2006). Within this frame, I understand the body politic in this chapter as the broad assemblage of actors, organizations, and events that organize social life (Thorkelson 2016, Butler 2004, Berlant 2011), or more specifically, that organize social policies that impact survivors’ lives. The diverse arms of this body are rarely coordinated or harmonious, claiming to help many survivors while often helping a few individuals. In this chapter, I show how this situation holds survivors in a state of precarity, as they are largely abandoned by the state and NGO services set up to help them. Some of my survivor-informants have arranged activities to help each other in response to this failure, with positive results but little reach among the city’s thousands of survivors.

During my first few weeks of fieldwork, I discussed living in today’s Seattle with every survivor I encountered. I asked them what it was like to live in such a rapidly changing city, which of its constantly changing programs or services they used, and what they would like to see that was unavailable. I included questions in my interviews with policymakers and NGO staff about what other policies, programs, and organizations they

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knew of or collaborated with in the city. Most of them did not mention much beyond what one young staff member at a brain injury NGO did: “I think it’s pretty limited. I will be honest. I think it’s a small community.” When these policy-informants were able to name other policies or programs, they rarely told me any more than my survivor- informants or their significant others already had. My key policy-informant described it best when she complained of the situation, “It’s just so disconjointed!” Federal agencies, state offices, and local NGOs that worked with TBI and TBI survivors often did not know of each other’s existence and rarely cooperated or coordinated their activities, even when their stated missions and activities aligned. Even when these elements of this political body interact and depend on one another, they do not see themselves as part of any larger entity. What I define as the “body politic” of TBI in Seattle is thus largely amorphous, consisting of the state laws, policies, and organizations that are directly related to TBI alongside numerous NGOs and community groups in and around the city.

As fieldwork progressed and I came to get my bearings in the city’s fluctuating social and political landscape, I reflected on and fleshed out this understanding during my fieldwalks throughout the city. The rapid gentrification in certain areas of the city were clearly evident, such as in the South Lake Union district, which until Amazon greatly expanded its operations had been home to low-cost apartment buildings, dive bars, and other accoutrements of contemporary American urban life. Now, however, it housed an ever-increasing number of high-rise “luxury condominium” apartment buildings, and its population appeared to be much younger, wealthier, and more well-educated than it had in the past. It was clear that none of my survivor-informants could afford to move into any of the new high-rises if they lost their current leases to the rapid growth in rental

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prices. Moreover, the policies or programs put in place to help if they ever lost their housing, employment, or social support did not account for these changes.

I also used my Case Studies to further explore and trace out TBI’s “disconjointed”

Body Politic. At the end of each interview I asked my Case Study survivor-informants and their significant others in-depth questions about policies, programs, or organizations they knew of and interacted with. If needed, I would prompt them with programs and services that I knew from their or their significant others’ earlier responses to or interactions with me. Highlighting the importance of the body politic in their lives, some of my participants even requested that I accompany them as they participated in activities or services for TBI survivors put on by the state or local NGOs. Eric invited me to interview and observe him while he participated in two such programs, and I encountered him at various activities throughout the year. Through my work with him and my seven other Case Study participants in the second half of my fieldwork, I slowly began to identify that body’s chaotic shape and effect as it influenced and was influenced by my informants’ lives in the city.

The Precarious Life of TBI

For survivors and their significant others, the many diverse policies, programs, and services for TBI survivors that are carried out by federal and state organizations and by NGOs do little to improve their lives. This nebulous TBI governance leaves them instead precariously balanced between well-being and emotional, social, and physical distress in Seattle’s rapidly developing and gentrifying city limits, as the benefits of the city’s recent growth pass them by. This is congruent with the situation faced by homeless

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people in the city, many of whom are survivors themselves (Gainer 2018). Survivors respond to this situation by meeting up and holding events for each other, but these only reach and potentially benefit a small handful of brain injury survivors.

Paul, my key informant and facilitator of a brain injury support group, began each meeting by reminding the diverse assembled survivors that there were members of “our community” who were impoverished, isolated, and homeless or at risk of becoming homeless. This was especially important in a city like Seattle, he would remind his groups, with the city’s exorbitantly high and ever-increasing rental prices. Nearly half of my survivor-informants, several of whom participate in Paul’s groups, depend on SSDI or some other form of public assistance. They often risk going hungry when they misplace their food stamp cards or spend beyond their weekly allotment. Their precarity is financial, as their daily survival is often one step away from losing their housing and personal sustenance if others do not step in to help when they need it. For example, Karla lives with several roommates to keep her housing costs low. Yet she is not able to afford to pay as much rent as her roommates, thus leading her to serve as housecleaner, which takes up her time and keeps her from returning to her pre-injury career as a video editor.

Charles can only afford his rent because of his father’s assistance. He does not know how he will continue to pay for his livelihood when his father, who recently became ill in another state, can no longer provide for him. Peter lives a modest life and rarely takes public transportation outside of his home. Even he requires assistance from his parents, who live hours outside Seattle in a small town and can only help him out when they visit every few weeks.

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Of all my informants who depend on public assistance, only Rhonda claimed that it is adequate to her needs. Yet even she worries about losing her public housing in a neighborhood of Seattle that she herself describes as unsafe after—and sometimes before—dark. She will not search for a new home, however, and fears joining the city’s rapidly growing homeless population, as rental prices continue to increase in the city.

Affordable units for single occupants exist almost exclusively at great distance from the city’s medical centers where many of my informants, most of whom do not drive, go for

TBI-related medical and psychological care. The city does provide free personalized public transport for certain individuals to wherever they need to go, but these “Access” shuttles must be reserved at least a day ahead of time for a given window of time for pickup and delivery. Zoe, for example, has shared stories of being left in Seattle’s ever- present cold drizzle for hours, having to park her wheelchair next to the sides of skyscrapers to stay avoid getting soaked. All of my informants who know of this service agreed about its unreliability and questioned the feasibility of expecting a population that often has problems with scheduling, planning, and executive functioning in their daily lives to use it.

Social conflict and the resulting isolation are other ever-present threats in some survivors-informants’ lives that can magnify and reinforce the precarity they face.

Though most of them report that their friends’ and family members’ initial reactions to their injuries were of concern and sympathy, the sentiment was often short-lived. In the years that followed, many acquaintances, friends, and even family members would react to their diverse communication difficulties, memory problems, emotional instability, mobility issues, and other impairments with frustration, suspicion of malingering, or

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anger. Peter, for example, is a shy man with a kind face and soft voice that is often hard to hear. He has few friends, none of whom he sees regularly, and only speaks regularly to his mom—who lives hours away—by phone. He is also a talented artist and playwright who survived a series of moderate TBIs in his youth. He has since written three full- length plays, receiving contracts to debut them at local theaters in Seattle. But they have never been seen due to his inter-personal problems and minor arguments with actors and directors. In one instance, Peter overheard someone in the cast ask another, “What’s wrong with [him]…why is [he] doing that?” When he replied, “‘Well I’ve got a head injury!’” they retorted with, “So?!” After this altercation, Peter retreated to his SSDI- provided apartment and the comfort of his cartoons, who he referred to as his only

“friends.” He did not have many human friends or connections in the city to rely on for social support or to help him better to react to his interpersonal problems, and Peter did not return to finish the play and did not speak of plans to complete production of any of his plays in the future.

Some of my survivor-informants who are not so fortunate to have the assistance of family become stuck in even more precarious situations. June suffered a severe TBI in a car accident several years before we met. Her youngest daughter, still in grade school at the time, served as her caregiver during frequent days when June would not get out of bed. That changed when June met and married a man who she says was “used to having a wife who lay in bed all day.” The two moved to Seattle after her daughter finished high school, where June reports that he abused her, stole or destroyed all her property, and then left her. Unable to work, she spent the next four years first couch surfing with acquaintances, then sleeping in homeless shelters, and finally living for 2.5 years in an

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abandoned storage unit with her cat. During this time, she lost contact with everyone save her doctors and her out-of-state daughters. She depended on public shelters for food and hygiene and considers it a “miracle” she was able to stay healthy during this time. June’s injury certainly did not “cause” her homelessness—that had much more to do with her abusive husband—but it did lead her to becoming overly dependent on him and unable to deal with the challenges of life in what she analogized to a “Wild West” when he abandoned her. Fortunately, June contacted the Resource Line and found housing soon after I left the field, before she developed any immediate health complications from her years on the streets.

One of the most extreme risks faced by survivors, as Paul frequently reminds his groups, is disturbingly common: suicide (Mackelprang et al 2011). Two potential instances occurred among my thirty survivor-informants during my fieldwork. In these cases, financial insecurity, social problems, and other personal matters slipped survivors’ attention or escaped their control, overwhelmed them, and drove them to consider ending their lives.34 One of my informants went through a period of posting alarming messages on social media saying that they became depressed and unable to take care of themselves.

The messages became suicidal but before they could act on them, Paul reported that he

“talked (them) down” and they continued living. Another informant began sending mass emails regarding suicide this past summer. The messages spoke of how their fridge was filled with rotting food, how they were unsure of how to go to the grocery store to buy more, and how others did not answer their calls for help. The emails abruptly stopped one

34 I am not mentioning any details about these two informants, both of whom shared stories of their suicidal ideation during their interviews. I use the genderless singular pronoun “they” to shroud their genders and further obscure their identities.

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day, with a final pleading that those of us who were able to share their story. Several survivors tried to track them down since but the practitioners who worked with them in the past have indicated that they are not allowed to discuss the case further. Several months later, my missing informant emailed me. They had indeed attempted to commit suicide, but they had not been successful. Staff at a local NGO helped them to regain their health, clean out their refrigerator, and make steps toward recovering their well- being. They might have been successful in their suicide attempt for a host of reasons, and the fact that they tried screams that the official state safety net resolutely failed in their case. Only a few personal contacts at local organizations intervened in the nick of time and saved their life.

As these last two cases make clear, the precarity of TBI survivors’ lives demands far more support than state and local programs are willing or able to provide. Even today,

Rhonda expresses concern at the growing crowding and crime in her neighborhood as more and more Seattleites are driven into it by increasing rent prices in the rest of the city. June says she is happy and satisfied with her new public housing yet also terrified of having another “setback” that might leave her unable to manage the rules and regulations of keeping her apartment. Peter is worried for the health of his parents, without whose help he would struggle to pay for his housing, creative endeavors, and daily subsistence.

Many survivors I interviewed face precarity not merely as bodily health or material well- being as they worry about what could fall through the cracks of their lives without others’ assistance. Even Frank, a direct beneficiary of the Seattle’s tech boom, admits that he does not know how he would manage his own health, household, and son if his mother was not there, though he could clearly afford it. Thus, even outside of situations of

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poverty and structural inequality, many—though not all—TBI survivors lives’ are characterized by precarity. Theirs is the precarity of something vital slipping out of their control, something without which dire consequences could follow, regardless of the efforts of TBI’s body politic in Seattle. In the final analysis, though it is too simplistic to speak of TBI directly “causing” poverty, isolation, homelessness, and even suicide, it is certainly implicated in far too many instances to ignore or deny the precarity in survivors’ lives.

A “Wild West” of Federal and State Law, Policy, and Bodies

My discussion of the policy and governance of TBI begins with the unwieldy and disconnected amalgam of TBI-related federal and state laws, offices, and services that my policy informant called “disconjointed.” In keeping with my discussion of TBI as narrative, policies and programs emerge in response to lobbying by organizations and individuals. They are each driven by their own particular stories and constructions of what the acronym means and are rarely harmonized or coordinated. At times, they can be wildly incommensurate and even conflict with each other. As a result, the various initiatives each jostle with each other for public attention and funding at the national, state, and local levels. The net effect of this jumble of policies and programs, despite the millions of public dollars raised and spent, is minimal. It is exactly what June meant when she related the situation to a “Wild West;” for her and my other survivor- informants, it was every bit as precarious as that imagined landscape.

At the national level, the most important legal development was the

Congressional Traumatic Brain Injury Act of 1996 (HR104-652). This law aligns TBI

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with the event of sustaining a head injury and does little that effects survivors in the long term. It also led to the development of a Congressional TBI (later “Brain Injury”) Task

Force in 2001 by Democratic Representative Bill Pascrell, Jr. The task force, on which

Republican Representative Don Bacon also serves, “works to increase awareness of brain injury in the United States, supports research initiatives for rehabilitation and potential cures, and strives to address the effects such injuries have on families, children, education, and the workforce.”35 Though the law and Task Force undoubtedly play roles in bringing TBI before the national attention, none of my survivor-informants knew of it and none of them could see any lasting benefit of it in their lives.

A TBI-specific policy that had slightly more impact was established in 1987 by a trial grant for the Department of Education’s National Institute for Handicapped Research

(now renamed the National Institute on Disability, Independent Living, and

Rehabilitation Research). The grant set up a nationwide network of independent 5 TBI

Model Systems at prominent medical schools around the country, including one at the

University of Washington (UW) in Seattle. Each Model System was required to set their own TBI-related research agenda, treatment strategies, and method for tracking the TBI survivors that passed through their care. The aim of this program, inspiring extensive academic research on the injury’s biomedical sequelae and treatment, has been moderately successful (Djikers et al 2010). There are now 16 TBI Model Systems throughout the country, an academic journal dedicated to TBI research and publication— called simply Brain Injury, which is run by a Model System out of Virginia

Commonwealth University—and several newsletters from other Model Systems.

35 This description is offered on the Task Force’s official web page, which is part of Rep. Pascrell, Jr.’s website: https://pascrell.house.gov/issues/issue/?IssueID=14891

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The Model System framework has led to remarkable advances in the diagnosis, critical care, and acute rehabilitation of those who survive TBIs injuries (Djikers et al

2010, CDC 2015, Gainer 2018). A few programs run by the UW TBI Model System

(UWTBIMS) had even helped some of my survivor-informants. Yet most saw few if any of these benefits in their daily lives years after their official treatment had ended. This may have been because most Model Systems publications target an academic audience and did not directly concern my informants’ daily lives “with TBI.” Thomas had been a participant in several UWTBIMS studies and it was through them that I first contacted him. However, he has never read anything published in the organization’s newsletter and is unaware of the nationwide framework of which both it and he are a part. Finn, himself a biomedical researcher, also participated frequently in research conducted through the

UWTBIMS. Like Thomas, he had not seen any concrete personal benefits from his participation in these studies. Even when UWTBIMS studies did help improve the lives of other survivor-informants (e.g., Faye, below), their primary activities were focused on clinical and rehabilitative research. They were thus limited in reach to the few survivors who participated in respective studies.

Another federal program that promotes public awareness of TBI is the US

Veterans Administration (VA). The VA has been active in the state to devise ways to the support the nearly 40% of disabled veterans returning from recent wars in Afghanistan and Iraq who are also TBI survivors, developing a mobile phone app called “MAX impact.” The app’s creator told me how it contains images and symbols that speak to veterans’ specific circumstances:

The app needed to—because of the veterans—it needed to live on the phone. They don’t wanna have connectivity. They wanted it to be really anonymous. That came from the

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veterans, not necessarily TBI guys, because: ‘If I am active duty and I don’t wanna admit that I’ve got a traumatic brain injury because they will just kick me out, then I need to deal with some of these symptoms. And they’re not that bad—but they’re bad enough that I can maybe use this app to help manage the symptoms.’ ‘I don’t want to let on to my wife or my whatever that I’ve got a TBI.’ So it needs to live on the app. We don’t want them to identify with the injury. We want them to identify with the solution.

Notably, MAX Impact avoids politicizing TBI or even making the injury or its effects public. It constructs TBI as an individual matter, something to be hidden from the world and “overcome” as part of veterans’ reintegration to civilian life.36 The app is also free and available to the civilian population to use.

Yet because it was made for veterans, none of my survivor-informants knew of or used it. When I mentioned it, several of them complained of and objected to the conflation of TBI with the military. Many of my policy-informants—who did know of the app—agreed, insisting that the identification of TBI with the military hampered their programs’ effectiveness. Thus regardless of its effects on veterans, MAX Impact had limited benefit for ordinary survivors.

Like the Model System framework, the nationwide network of Departments of

Vocational Rehabilitation (DVR) has long attempted to aid survivors. In line with its original purpose following the Civil War that strengthened after the first World War, the federal-state partnership that created distinct DVR offices in each state focused specifically on finding effective employment for disabled US veterans (Linker 2010). It opened up in the 1950s and ‘60s to include all US residents with all types of disabilities

(Elliot and Leung 2004) and has since been one of the major federal programs

36 Messinger (2010) discusses this same concern by the US military fitting soldier-amputees with prosthetics that hide their disability, while Aciksoz (2012) identifies this same phenomenon in disabled Turkish military veterans for whom, though the state cannot hide their impairments, it downplays them to avoid the stigma of disability

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responsible for TBI survivors. Although the program is clearly in line with neoliberal principles of personal independence and self-reliance (Foucault 2008, Cruikshank 1999,

Lorey 2015), the program has much deeper roots that are based more in the country’s obligations to veterans than neoliberal principles.

As more and more individuals who suffer moderate-severe TBIs are surviving their initial injuries (Djikers et al 2010), the Washington DVR office, which is housed in

Seattle, is increasingly limited in its capacity to help survivors to find and keep employment. Because of this, staff told me, the government has imposed significant limitations on the program, which can now serve its clients—who the agency calls

“customers”—only during a 90-day “window.” If they are eligible for AppleHealth, the state Medicaid plan under the Affordable Care Act (ACA), DVR case managers will connect survivors with longer-term healthcare support after the window closes. DVR staff can do little to support those who are covered as dependents on others’ private health insurance plans or whose workplaces provide them, however. The WA DVR office can also, on a case-by-case basis, refer its customers to community organizations and

NGOs that will continue to work with survivors longer-term. Yet the DVR staff I interviewed said that they cannot do even this much as often as they would like. Only one of my survivor-informants, Faye, was actively working with DVR during my fieldwork.

Because of the particular details of her story, as I explain below, she was not able to stay with them long enough to benefit from their services.

Washington (WA) State policy has a similar—though more consequential— relationship with TBI and survivors in Seattle. The injury was largely ignored throughout much of the state’s recent history, despite the state being home to one of the earliest

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Model Systems. In the first decade of the 2000s that changed, as survivors and their significant others began pressing the state for recognition and support of their particular needs. One man in particular, a gregarious and pugnacious survivor named Tommy

Manning, shook the state out of its earlier state of inaction when he arrived in Olympia to push for state policy change in 2007. According to the coordinator of the State Council that resulted from Tommy’s actions, the survivor lobbied “on the steps” of the Capitol

Building “every day” for the next several months. Though this seems an exaggeration, it may not be far off the truth. Later that year, the state passed the “Tommy Manning

Act,”37 a landmark law that established a WA State TBI Council to be coordinated by the state’s Department of Social and Health Services (DSHS). It mandates the Council to carry out three specific activities: 1) running a free statewide resource line for state residents to call learn about TBI, and find access to care, services, and resources,;2) funding support groups and training facilitators around the state; and 3) raising awareness of the injury, its prevalence, and its effects throughout the state. The Council consisted of over 20 members, most specifically designated because of their state or private employment, along with two survivors and one family member or caregiver. The members are all unpaid volunteers, while the Council coordinator and his sole assistant are state employees. Council funding comes from a $1 fee levied on all in-person ticketed road violations,38 a convenient funding source that the Act’s drafters thought would be palatable with the public. It also has a symbolic connection to the injury, as motor vehicle accidents were then and still are one of the primary causes of TBI (CDC 2019).

37 The bill can be found in its entirety at https://app.leg.wa.gov/RCW/default.aspx?cite=74.31&full=true. 38 It was recently increased to $2 and then $5, though Council members stressed that even this was not a sufficient amount of money for their needs.

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Washington’s other TBI law, RCW 28A.600.190, is also named after a survivor,

Zackary Lystedt, established a mandatory concussion protocol in high school sports in the state. The “Lystedt Law” follows the same pattern as the Tommy Manning Act: it was litigated in response to an individual case and ignores the great diversity of bodily, mental, and social matters that are tied up in lives “with TBI’ that I discussed in the previous chapter. Then-governor Christine Gregoire signed the bill into law after Mr.

Lystedt’s attorneys successfully argued that high school policies had not restricted him from returning to the field of play after sustaining a serious blow to the head during a football game. He was re-injured soon afterwards, and the combined effects of two concussions, so-called “mild” TBIs, amounted to a much more severe injury that left him with lasting impairments. The policy was the first of its kind in the nation and has since been followed by all 50 states. Moreover, regardless of the law’s very real success in preventing the more serious impairments that result from multiple minor TBIs

(concussions), it does not target moderate-severe TBI or survivors’ lives after such injuries occur. As such, regardless of the very real attention that the state has in recent years begun to pay to TBI and TBI survivors, it largely misses the priorities of the majority of survivors, including all of my 30 survivor-informants. Also, by focusing on childhood concussion as something to be overcome through timely biomedical intervention and personal effort, the law helps to solidify the neoliberal picture of TBI as an individual concern for which survivors alone are responsible.

One of the most significant hurdles the State Council faces in its attempts to recommend policy for TBI survivors is that such policies are often proposed in reaction to and targeted at specific survivors and their individual set of impairments and needs for

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social services, such as ones that provide mobility and transportation services for survivors with mobility impairments. These policies largely support and are administered through private organizations set up to help in these particular cases. All of this is keeping with neoliberal biopolitical norms that position the individual body as the subject of policy and governance via private organization (Foucault 1975, 1991, Cruikshank

1999), norms which scholars have directly tied to precarity around the world (Butler

2009, Puar et al 2012, Lorey 2015). The Council’s coordinator claims that this system is not set up to respond to the particular needs of every survivor and meets with individual survivors in person to learn about their concerns and problems for himself. Yet by doing so he is only able to learn of and respond to certain cases, ignoring others. Meanwhile the

Council relies on official statistics, the stories of Tommy Manning, Zachary Lystedt, and other survivors made famous through political and legal action, and the opinions of its members (including two survivors and one significant other) for its construction of what

TBI is and can mean. As both Paul and Faye—who had attended council meetings in the past—argued, this left out the needs and interests of many survivors throughout the state.

The Council’s activities thus entrench the status quo in which TBI is poorly understood and represented by a few extraordinary survivors.

Many of my survivor-informants were unaware of the Council’s existence, even when they participated in the programs that it funded. These included the free Resource line, Support Groups, and events held throughout the state and city. Yet even the few of my informants who did know of the council did not take part in its activities. My key informant Paul refused to apply for and receive Council funding for his weekly support groups. He preferred to rely on donations from individuals and community organizations,

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as I will discuss in the next chapter. The Council may have been started with the best intentions for the state’s thousands of survivors and their significant others, yet for a host of reasons its activities have not reached most of my survivor-informants. They are instead left to fend for themselves.

In keeping with contemporary norms of governmentality (e.g. Foucault 2008,

1991), federal and state governance relies on rely on NGOs, private companies, and other organizations to provide services that it is either unable or unwilling to provide (Lorey

2015, Butler 2009). Ultimately, while state legislation establishes TBI as an area of intervention, WA state governance specifically for TBI operates primarily through limited medical coverage for rehabilitation services through DVR and the state’s

Medicaid program, Apple Health.39 This support allows survivors to live and function on their own. The Tommy Manning Act raises millions of dollars annually but these are allocated to private NGOs and community organizations to put to use. Thus, from a policy standpoint, the governance of TBI in and around Seattle is confusing and limited.

Shifting Governance to NGOs and Blurring Definitions

Interfacing with survivors themselves, who are largely absent from the governmental bodies and processes just discussed, is the responsibility of private organizations.40 The state cannot order or coordinate the programming of these private organizations to ensure that they complement and do not compete with each other,

39 The WA DVR does not give these services directly but arranges and pays for them on behalf of its customers. 40 There are two designated survivor-members of the Council, and another designated member who was both a survivor and spouse to a survivor, but none of them lived in or near Seattle and they did not interact with any of my survivor-informants or the members of the support groups I observed.

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allowing a dizzying cacophony of organizations to arise. Largely in keeping with neoliberal governance principles (Ganti 2014, Mitchell and Snyder 2015), it delegates this responsibility to an outside NGO, the Brain Energy Support Team (BEST). The

Council claims to retain oversight of how the organization disburses its funds and

BEST’s executive director attends most Council meetings. But the director was unaware that the support groups I attended, which were among the most prominent and most well- attended in the state, had neither applied for nor received state funds in over a year. Thus, despite this oversight, private organizations retain control over services and direct contact with survivors and their significant others, those whose lives are most directly and profoundly impacted by TBI. As such, these organizations constitute the majority of the

Body Politic of TBI in Seattle, and it is to them my analysis now turns.41

These organizations present a serious problem for that body, however. Their missions are not built on the same biopolitical construction as the governmental offices above. They begin the social process of blurring the already fuzzy boundaries of TBI.

None of the NGOs I encountered during my fieldwork serve only TBI. They instead focus on brain injury, a much larger conception that includes stroke, aneurysm, brain cancers, and all other physical “insults” of the brain (Boake and Diller 2005). TBI is the most common of these, despite not being nearly as well-known or understood as stroke or brain cancer. Its body politic is thus also hazy, with organizational policies, programs, and services for TBI all subsumed under the umbrella of brain injury.

41 Few programs in the city are only TBI-related. Most of these were entirely clinically-based, however, and so remain within that world. They do not fall within the Social Life of TBI. The most prominent of these, Full Life Care, had outpatient as well as inpatient programs. Its primary activities are focused on clinical well-being, and it is much more relevant to a study of survivors still in the acute phase of treatment for their head injuries. Since this dissertation is focused on TBI outside of biomedical and acute care, I did not include the organization in my study.

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The largest and most influential of these NGOs in the city of Seattle is the Brain

Injury Alliance of Washington (BIAWA). The organization began as a Brain Injury

Association of America (BIAA) affiliate in the 20th century as what its current director calls a “mom and pop shop.” Early in the 21st century, due to a host of reasons and concerns that were shared by many other state chapters of the BIAA, it split from the national association along with several other state chapters. Each of these organizations, renamed Brain Injury Alliances, is fully independent. They meet each other occasionally at national conferences but have no central or unified control of their activities and no singular agenda. Meanwhile, the BIAA continues with a more centralized structure and targeted focus that some of my policy-informants argued is set by for-profit rehabilitation hospitals and service providers. As a result of this split, its current director and several others of my policy-informants mentioned, neither the network of Alliances nor the

Association is as strong or effective as they would be if reunited with each other.

The BIAWA serves as the primary non-medical organization for survivors in the city and state. It attempts to register most new TBI survivors soon after they leave full- time inpatient care in the state’s many hospitals and medical centers. By doing so, it intervenes early to introduce survivors in the wider Brain Injury Community (BIC) that is the subject of the following chapter.

Its programs are—like survivors themselves—diverse and growing, constantly including new activities and opening operations in new communities in response to the needs and interests of its members. During my fieldwork, it began offering its patented

“Brain, Health, & Wellness” classes that offered classes in Brain Injury Yoga,

Meditation, and Nutrition, each of which were requested by many of its members. These

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classes were located in areas north and south of the city of Seattle, but BIAWA began offering the same classes in the city itself in the year after I left the field. The organization also holds monthly community-building and awareness-raising events throughout the city for survivors, their significant others, and interested community members. The events are meant to be fun, light-hearted, and affordable events that some survivor-informants referred to as “bright spots” in their monthly schedules. Many of my informants would agree, and several of them—especially those who live on public assistance—attended each and every event held during my year of fieldwork. The events also frequently serve as fund-raisers, which is standard among the city’s NGOs and is a central activity for NGOs in neoliberal America (Moore 1995, Ganti 2014). This aspect was not lost on my survivor-informants, some of whom commented that they felt used as a money-making strategy for the NGO.

However, BIAWA events also depend on the largess of the NGO’s partners in

Seattle’s business and legal communities. The partners donate handsomely at such events as the formal Brain Injury Gala, whose tickets go for several hundred dollars and which includes a fully catered 3-course dinner and an extensive auction of donated goods and services. Even this funding source can run short some years. Although no staff member would tell me for certain, when my parents and I attended the Gala along with a few other survivors and their families on a scholarship from the BIAWA, we all noted that the auctions and dinner seemed a little subdued from ones we had previously attended and the dinner tables did not fill the immense convention space quite as much as they had in years past.42

42 The BIAWA may be the most active brain injury NGO in the city, but it is far from adequate in the eyes of most of my survivor-informants and their significant-others. That is part of the reason that their

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Numerous smaller programs exist in the city, as well, each attempting to fill a niche or meet the needs of one or several individual survivors. As such, they are built on solid principles of public administration (e.g. Moore 1995), but without strategic coordination they compete with each other for scarce funds and often have little impact on any survivors but the few they directly serve. Small organizations or programs thus often close relatively soon after they open, however, leaving many survivors without a stable landscape of services and supports on which to depend.

ActiveBrain, for example, was started to support more severely impaired survivors, and several of my survivor-informants who had survived severe head injuries took part in its programming. It originally began under the administration of a local disability-services NGO as a kind of Mental Health “Clubhouse,” a place for significantly impaired survivors to congregate and pass their time together without having to interact with the world outside. During my fieldwork, however, ActiveBrain’s new director used it to serve a more rehabilitative function. Prospective “members” first meet with the organization’s director where they decide if the program is right for them. If so, they enroll and in the same meeting decide on concrete goals to work on at the center that will allow them to live independently. They begin attending one to several days per week to work on these goals by completing basic tasks and games with ActiveBrain’s volunteer

programming is still evolving, according to several staff members of the organization. As is the case with most NGOs, they are trying to do as much as they can do with limited funds and personnel. They instead depend on charitable donations from wealth Seattleites and Seattle firms. This funding allows them to pay staff salaries, office space, and other overhead costs, hold monthly events for survivors, their caregivers, and an occasional family member, host free survivor luncheons at a Seattle brew pub, and in recent years to run a regular series of free “Brain Health and Wellness” classes for survivors and their significant others in two locations outside of the city. But their funding also limits the number of employees they have, events and classes they can hold, and the amount of food survivors can order at the pub. In response, they partner with local law firms, lending the symbolic capital (Bourdieu 1980b [1977]) of their name to the firm for help with hosting certain events and funding some of their programming.

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staff and other members. Under the new model, ActiveBrain serves as a space where significantly disabled survivors come, stay for the time they are unable to work to support themselves, and leave once they have met those goals and ostensibly regain a modicum of independence in their daily lives. The organization and its parent company had never put in place a funding strategy, instead relying on grants from the Council. When the government body announced that it was withdrawing its support of the organization,

ActiveBrain’s parent NGO abruptly closed its doors, sending shockwaves throughout the community of survivors that attended it. Though the program certainly benefitted some, it was subject to the whims of the state’s “Wild West” of political organizations, rendering it unable to help them regain any independence it had not already.

Several of my other survivor-informants regularly attended ActiveBrain before it closed down. For them, it was a necessary program, a place that would accept them and their impairments and not push them beyond their abilities. Eric, for example, had been unable to walk since his second injury. As mentioned in the last chapter, he had been using center’s free classes, offered in collaboration with NGOs such as BrainDance, to begin relearning how to walk, to hold conversations, plan meals, and numerous other small tasks that he has struggled with since surviving his injury. Through innovative programming, which was attentive and adaptive to his needs, the program clearly had a large impact on his life, for which he continually expressed thanks when I observed him there. Yet neither he nor his mother, who relied on ActiveBrain to keep her son engaged while she worked to support them both, had any idea of where they would go after the program closed its doors.

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Janice, a middle-aged woman who had survived a severe TBI from a car accident in college, worked with both Active Brain and other organizations in the city during the course of my fieldwork. But because ActiveBrain did not collaborate with or have any record of these other programs, staff could not contact them to arrange for Janice’s continued care or support. Janice, who lives alone and does not have any family in the city, was thus left entirely without daily support or activities. She soon fell into a malaise with disastrous consequences for her mental and physical health, which she felt reversed any gains that she had made during the years she attended and relied on ActiveBrain’s services.

Before it closed down, ActiveBrain’s innovative programming had not worked for all members as well as for Eric or Janice. Some past members who had trouble interacting with others were asked to leave and not to return. Karla was one such survivor. She did not understand why the organization had asked her to leave and spent much time and effort trying to persuade ActiveBrain and its parent organization to let her return. Moreover, ActiveBrain may have used its innovative and individually-tailored programming to help some survivors, but because of its strengths it was unable to help countless other survivors in the city. Many of my survivor-informants were unaware of its existence and some such as Thomas thought they might have benefitted from it in the early days of their respective “recoveries.”

Other small programs which attempted to help survivors through the difficult times after ActiveBrain closed. One I call BrainCell met at one of Seattle’s many local universities. As a small and low-budget club, the organization could only deal with survivors on an individual level. It was started by a student, Yuri, who had had learned

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about TBI in one of her introductory neuroscience classes. When Yuri asked her professor about the injury, which she had only ever attributed to football players or soldiers, she learned that there were no significant activities supporting TBI survivors at her school or in the surrounding community. In response, she started a local chapter of a national organization that was founded…recognizing that there wasn’t a lot of social support on campuses in addition to recognizing that college students could be leveraged very uniquely to meet the needs of the brain injury community. Because again I think brain injury is on a spectrum, everybody is very unique, so you have to be flexible in how you approach people. You can’t just say “This is how we’re gonna do it and that’s it.” And college campuses and college students I think have a very unique opportunity to be part of that. Because you have motivated young people who are ready to learn more about the world around them, and at the same time by virtue of being an organization associated with a college there are certain supports in place. So we could apply for funding for student organizations through the university and [in] that way not really compete. And I know that’s a big problem that everyone recognizes with non-profits in general, like funding’s always an issue. So really, I would say it’s two things. It was a practical side like college organizations can be really flexible to meet everyone’s needs—specifically those with brain injury—and then a recognition that there was a social deficit in terms of what was available.

In Yuri’s description, her club uses a model similar to the BIAWA’s framework. It constructs brain injury as an individual bodily condition with diverse and particular impairments that vary from survivor to survivor. An independent organization—of college students, in this case—is uniquely suited to meet and work with this construction.

They promote themselves via word of mouth, inviting the few survivors treated by their professors to campus once a month during classes. The group of 10-20 students, survivors, and sometimes survivors’ significant others sit in a circle of chairs in an empty classroom. Similar to support groups, participants discuss their lives, describe any successes or problems they are facing, and celebrate each other’s successes or help each other to find solutions to their problems.

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The club also plans occasional social and casual events in the city, two of which occurred during my fieldwork. At the first of these, they simply sat in the grass with survivors on a sunny day. For the second they planned a trip to a Seattle zoo with survivors and their caregivers. A few of my informants participated in these events, appreciating the chance to meet and spend time with the students. They enjoyed these events where their impairments and social needs were respected accommodated without mention or fuss. In ways that those of my survivor-informants who were regular participants in the group mentioned, the students and survivor participants in the club would act as significant others in their lives, giving both they and their actual significant others (for those that had them) respite and relief from the demands of their daily lives.

These smaller and younger organizations in which my survivor-informants participated were joined by several others to complete the dizzying multiplicity of the public and private organizations jostling with each for prominence, money, and publicity throughout the state. Yet unlike the larger and more organized NGOs, these small survivor-led activities have a much more flexible and collaborative nature that is more in keeping with what I earlier defined as the narrative particularity and complex embodiment of TBI. They attempt to account for what the larger organizations do not, understanding all brain injury—including TBI—as a complex and multiple concept that is much more expansive, ephemeral, and shifting than both the individual bodily injury and its immediate biomedical consequences. Yet they are all subject to the whims and constantly shifting funding priorities of the state’s disorderly “Wild West” of TBI laws, policies, and organizations. In extreme cases, these smaller brain injury organizations

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may be forced to change their programming to better align with the larger TBI-focused organizations or close permanently, as happened with ActiveBrain.

Survivors Struggle to Help Themselves

Ultimately, none of my survivor-informants or their significant others, and not even most of my policy-informants, were aware of the full extent of the programs and policies comprising TBI’s body politic. The four survivors that I contacted through the

Model System were unaware of the national policy that established it thirty years earlier and did not see any personal benefit to the Model System studies they had participated in.

Many more were familiar with the BIAWA and several regularly attended BIAWA events. But few of them understood how the organization also ran the state’s free

Resource Line for TBI survivors, how extensive its activities were, or how the organization covered the entire state and not just the city of Seattle. Additionally, though at least one of my survivor-informants participated in each of the brain injury organizations listed above, there was no understanding of the full extent or form of TBI’s body politic in the Seattle.

Rather, the most common refrain that I heard was that the programs described above are helpful to a few but far from sufficient for the majority of survivors. Most of my survivor-informants and their significant others had not known of any of these services or organizations until I mentioned them. Even those who had attended past council meetings and frequently participated in events held by TBI NGOs did not see evidence of any coordinated or strategic political action from either governmental or private organizations. They felt passed over and ignored by state and NGO offices set up

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specifically for them and implemented their own programs in response. Survivors’ experience with the body politic of TBI in Seattle was largely one of struggle, increasing their distress rather than alleviating it.

In response, some of my survivor-informants held events of their own, though owing to the precarity faced by so many of them, these were few in number and limited in scope. One of these, hosted by Paul and Cheyenne, was the only international or global activity related to TBI or brain injury, the Brain Injury Global Picnic. According to Paul when he recounted the origin story at Seattle’s commemoration of the event, a British survivor first proposed the event on an online message board 2012 after having a dream one night of all the survivors around the world united in celebration. The Global Picnic invites survivors, their significant others, and those who work with them to come together and raise a glass of wine, soda, or whatever liquid they choose in celebration at the exact same time around the world. Paul and Cheyenne told me that the event created a sense of fellowship and belonging to an identity that was greater than their own particular injuries or circumstance. Moreover, as I discuss in the following chapter, it expanded that identity to include all survivors of physical brain injuries, including stroke, aneurysm, and cancer alongside the more frequent TBI. As such, the brain injury constructed by this event, created and enacted by survivors themselves, is more than biomedical injury, particular narrative, network of significant others, or even broader political community. It is an identity that groups survivors of TBIs and other brain injuries together, along with those they are close to, despite whatever other biological, social, or other factors intersect their lives and distinguish them from each other. The event is thus a way for survivors to declare their own identity as separate from the Body Politic, separate from governmental

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laws and policies that delineate what a survivor is and what they need. It was also distinct from NGO programs that attempt to help survivors by attending to their particular needs but fail to serve the population of survivors as a whole. It was a way, in Paul’s words, of saying “we are here.”

Other survivors organized events that further developed this identity. Faye organized a day-long brain injury conference at one of the city’s local hotels to promote a collective survivor-identity in the city. I observed her when she was organizing the event, as part of her case study. She seemed to deliberately take on the air of a state or NGO employee while doing so, mentioning nothing about brain injury nor disclosing her identity as a TBI survivor in her negotiations with venue managers. I mentioned this to her later, and she confirmed that her “passing” (Goffman 1956) was deliberate. She had done so many times before and had only been unsuccessful at doing so when tired— which she was that day because of problems with her mother-in-law. It was largely for that reason that she had asked me to come along. She said that “knew” that I would step in to cover for her if she grew fatigued and was unable to speak.

This strategy of developing relationships with those she could call on when needed was a technique she had been taught in a Model System study she had participated in years earlier. In the study, which was only open to a select few participants, Faye learned small techniques to get by on her own strengths while cultivating and keeping those around her to help when her she grew fatigued or overwhelmed because of her TBI. By holding the event, Faye wanted to pass on to other survivors what she had learned in the study, spreading its benefits beyond academia:

So, I worked this program to show me in little tiny baby steps how to stay out of my own way and to accomplish the things that I wanted to in life. And I realized that shortly after

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graduating from the program that I was able to invite other people to do the same. In spreading [it] from one survivor to another, without having to have a counselor—yeah, I had to kind of make questions for people to ask their counselors later if they needed more help than I could give them—I’m certainly no therapist but I’ve certainly walked through this park a long time and I know where all the fun features are and I know, where all the mud holes are—and, so, by working this program solemnly I’ve learned how to just avoid the potholes and stay on the higher ground. And I’m hoping to take more people with me through positive motivation speaking so that everybody can enjoy the [benefit of the program].

The event consisted of several survivors and the creator of BrainDance giving messages of hope and encouragement as well as sharing their strategies for dealing with their impairments. I was invited to present on what my research had uncovered about the roles others played in survivors lives, which Faye felt were in line with what she had learned in the Model System study she participated in and wanted to pass on to other survivors.

Another of my survivor-informants and policy-informants, Cheryl, also organized activities for survivors to “give and receive emotional support to people who’ve experienced a brain injury,” support which she herself had not experienced after sustaining two brain injuries 20 years earlier. Cheryl announced the events at a monthly support group she held in North Seattle, then publicized them through her extensive network of survivor and NGO contacts. Owing to her own experiences as well as suggestions she received from members in her group, she also arranged for a trained instructor to teach adaptive yoga classes to group members for a reduced fee. When the instructor could no longer teach the classes, Cheryl completed training to teach them herself. She stated in an interview, “It is tremendously meaningful to the people in the class that it’s taught by someone that has a brain injury and that can speak to how yoga helped me recover.” The strength of her facilitation, she said, is in how she instructs participants on their own terms and in regard to their own particular bodily capacities.

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She similarly leads several additional projects in collaboration with members’ interests, building on their capacities and accommodating their impairments—whatever those may be—without mention. This is something that, in her view, the larger organizations like the BIAWA simply cannot do. She does not often collaborate with any of the other survivor-led groups, however, and I heard from both her and several other of my policy- informants that her relationships with other organizations had worn thin because of this.

Each of the above activities are survivor-led efforts to give survivors what the

Body Politic had not. Faye held her seminar because the large benefit she saw in the

Model System study was not offered to survivors. Cheryl had not received any emotional support from friends, family, or TBI organizations after her two injuries and wanted to help survivors benefit from what the Body Politic had failed to give her. And finally, the global picnic was a survivor-led and organized activity that attempted to establish an identity that had not yet existed. I will discuss this identity more in the next chapter but mention it now to highlight one of the many ways in which survivors, identifying wants and needs that are not being met in the city of Seattle, attempt to raise their voices and help each other. None of these survivor-led efforts have much reach beyond a small network of survivors who already know each other, however. Ultimately, with the exception of the Global Picnic that only seeks to promote a shared identity among survivors, the above activities may improve the lives of individual survivors but leave most survivors and their significant others without assistance or solace as they struggle to be help themselves in the disorganized and competitive body politic of TBI in Seattle.

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Conclusion

As each of the survivors’ stories that I shared above make clear, the connection between TBI and poverty, isolation, homelessness and even suicide in the frenetic and dizzying commotion of Seattle is clear. I could see it even while I was still in the field and the fight over the EHT raged across airways, newsstands, and streets, which is what led me to talk to the bill’s supporters and opponents. It seems that there is no shared strategy or set of activities between the diverse actors, organizations, and programs that focus on TBI in the city. Local TBI NGOs fight with each other for funding and attention rather than furthering their missions in the city’s rapidly developing neoliberal political landscape, rendering their efforts even less effective and in some cases causing outright harm. It thus deserves much greater attention from social scientists who are interested in how personal injuries and Though this was not a key or central focus of my data collection efforts, it was a key part of the stories that all of my informants, including survivors, their significant others, and policymakers and NGO staff wanted to tell.

The policies, ineffective governance, organizations, and private actors that collectively make up what I call TBI’s body politic rarely listened to survivors in the city, leaving many of them in a situation of precarity that does not come directly from but is nevertheless related to their impairments. This precarity, when significant others did not or could not step in to help when needed, drove many of my survivor-informants and even their significant others to poverty, social isolation, homelessness, and even (in at least two cases) attempted suicide. Consequently, just like for Seattle’s large and growing homeless population—many of whom are likely TBI survivors themselves—neither city nor state has been able to implement policies that would help my informants out of these

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situations. Instead, the back and forth over policies of social welfare like the EHT keep them perched on the edge of disaster, able to do little to improve their situation beyond it.

My survivor-informants and their significant others thus live in a state of precarity, teetering between well-being and catastrophe in the “Wild West” of TBI’s body politic in the city.

In conclusion, I offer three specific policy recommendations that I draw from my fieldwork and analyses coupled with my own experience and training in public administration. First, there is an obvious need for greater awareness-raising about the prevalence of TBI and its impacts and complexity in survivors’ lives. Most of those I encountered in the city who were not survivors, their significant others, or those who worked for them, had no knowledge of the injury. One of the key points brought up repeatedly in Council meetings I attended was the importance of such an awareness campaign. State policymakers and NGO representatives had initiated such campaigns in the past; however, their efforts were not coordinated with each other and had little impact, according to my policy-informants.

Second, a more concerted effort should be made to assure that survivors are aware of the resources, programs, and services available to them and their significant others.

The current strategy of providing survivors with a single collection of resources and information when they leave inpatient rehab care is useful but failed to help many of my survivor-informants. Several of them lost or threw away this packet or simply never looked at it in the early days of their “recoveries” at home. Moreover, no one knows of all the dynamic and constantly changing NGO and survivor-led activities for survivors in the city. A single packet cannot account for these.

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Third, any continued rehab or outreach to survivors in the community should always identify and involve any significant others upon whom they can depend. TBI is not just an individual injury or its related sequelae but something families and entire groups of people “live with.” This is clearly in line with my data and analyses, as well as

Person-Centered Planning and Practices principles put forward by the US Department of

Health and Human Services.43

Finally, policymakers and NGOs should collaborate and coordinate the policies, programs, and services they recommend and implement. One of the most significant criticisms that most of my policy-informants lodged against their colleagues was about the lack of cooperation and coordination between the numerous state and private organizations that devise and execute programming for survivors and their significant others. A central organization, such as the council, DVR, or state legislature should take the lead at gathering and organizing information about these diverse organizations and policies.

43 See for example, the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) at https://ncapps.acl.gov/home.html. NCAPPS is currently conducting a nationwide “TBI Learning Collaborative” for state teams of government officers, NGO staff, and TBI survivors and their significant others.

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Chapter 6 “And the other thing is”: The TBI Community and Biosocial

Identity

Introduction

The frequency with which some survivors slipped through the cracks of the social safety nets set up to catch them from falling into poverty, social isolation, homelessness, and suicidal ideation, was not overlooked by the Council and numerous NGOs that work with TBI survivors. Recognizing this, they and other members of TBI’s Body Politic have launched efforts to help survivors throughout the state to help themselves. These efforts all largely resemble one another, falling within what has often been proposed as a catch-all solution for social problems in the US (Joseph 2002), a solution summed up in a single powerful word: “community.” The term itself does not have a singular meaning, adding even more layers of multiplicity and complexity to TBI. As I will discuss in this chapter, there are two major visions of what this community is or should be, though even these two have fuzzy and ambiguous borders. When and where they clash, dramatic consequences for TBI survivors and those closest to them can follow. In extreme— though not unheard of—cases, this friction can even lead to the most problematic social problems TBI-as-community seeks to counteract.

As I will explore in this chapter, that community is rarely tied to TBI alone. It instead includes strokes, aneurysms, cancers, and any and all other physical brain injuries alongside the more prevalent TBI. From a biomedical perspective, the bodily

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consequences of these injuries are largely the same as those of TBI discussed in Chapter

1: damage to neural cells and networks resulting in a vast range of possible sequelae that are only identifiable when they manifest in survivors’ bodily experience and action.

These injuries all follow a similar pattern of biomedical treatment, as well. Once survivors of all brain injuries (including TBI) are discharged from inpatient rehab, they are often directed by medical professionals to seek out and register with the BIAWA, local Brain Injury survivor Support Groups, or join any number of programs that have sprung up in recent years. Together, these groups and organizations are foundational parts of the nascent Brain Injury Community (BIC) of Seattle. This community blurs the biomedical distinctions between brain injuries, joining TBI survivors (who are usually younger) with stroke and brain cancer survivors (who are usually older). It leads participants to identify with each other through the social aspects of their lives that they may share—including precarity, relationships with their significant others, and similarities in how they interact with others in the wake of their injuries—while acknowledging but moving beyond those they do not.

This amorphous community makes up the final, most social, and most ambiguous meaning of TBI I analyze in this dissertation. In this chapter, I want to explore how it constitutes personal injury as the identity of a community. Without ever defining specifically what they were referring to, my informants frequently referenced this community as the “TBI Community,” the “Brain Injury Community,” or more simply

“The Community.” These three names were often used interchangeably, though they did not always indicate the same grouping. The BIC further expands its boundaries to include brain injury survivors’ caregivers and significant others, professionals from the medical,

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legal, governmental, nongovernmental sectors, and even neighborhood associations along with survivors themselves in a loose, fluid, and shifting association. In this chapter, I will flesh out and elucidate the BIC, drawing on my interviews and observations of the many events that claim to join together its diverse arms. I will assess how the casual elision of

TBI with other brain injuries helps construct “brain injury” as a single thing rather than a diverse assortment of neurological impairments, embodied experiences, social interactions, and even professional activities. Ultimately, this final chapter will define community, held as a solution for many of the problems presented in the last chapter, as the most social of TBI’s meanings.

My argument begins with a distinctly political event that retains its focus on TBI: the TBI Council’s annual Washington State TBI Conference (hereafter “the

Conference”). Drawing on social interactionist theory, I describe how the Conference constructs its community as an arena (Strauss 1978), comprising multiple social worlds that all have different perspectives and definitions of TBI. I then describe how several of the NGOs and community groups presented in the last chapter continue the work of the

Conference, broadening the scope and reach of its community. They bring all survivors of physical brain injuries into the BIC through various events that celebrate survivors, raise awareness of the prevalence and consequences of brain injuries, and—vital for the

NGOs—raise money. This deliberate construction of community serves multiple purposes, not least of which is economic. These organizations and events construct a sociological arena more than a traditional imagined community (Anderson 1983, Joseph

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2002). I adopt a metaphor from development studies to name this type of imposed the

BIC “from above,” or BIC-a.44

Simultaneously and in response to these imposed community identities, diverse brain injury survivors form smaller groups of their own. These distinctly biosocial groups give their members a sense of fellowship, a chance to serve as significant others for each other when needed, and a sense of identity that is based on both. I focus on the most active of these groups in the city, those led by my key informant Paul. Adopting the same metaphor from the BIC-a, I refer to these distinctly biosocial survivor-organized and led groups as community “from below” or BIC-b. The final section of the chapter demonstrates what happens when these two sides of the BIC clash, fracturing the harmony in Seattle’s BIC and forcing my survivor-informants to choose between the

BIC-a and BIC-b. The BIC thus further complicates and detaches the meaning of TBI from the singular event the acronym evokes, harnessing and contesting it in a shifting and fluid social environment through which survivors, both independently and with the aid of their significant others, were forced to navigate to improve their lives. Many of them did so successfully but a few others did not, rendering the BIC an ambiguously effective response to many survivor’s problems.

The State TBI Conference

I first began to see what some of my informants referred to as the TBI community at the two-day State Conference in my fifth month in the field. Ironically, this pivotal

44 This popular terminology may not be frequently mentioned in anthropological studies of international and community development, but it still carries significant cache among practitioners. Some such as Mosse (2005) and Frankenberger and McCaston (1998) have mentioned this term in their analyses, but it is more commonly featured in more popular frameworks such as Prahalad (2010), and Easterly (2007).

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event in my fieldwork occurred outside the city of Seattle. This should not be surprising, however, because while Seattle is the state’s population and economic hub, its capital and political center lies 60 miles to the south, in Olympia. The Council, as an extension of the state government, chose a venue for its Conference located between the two. The city of

Tacoma, on the southern edge of Puget Sound, was thus where I gained my first insight into the nature of the TBI community.

I woke up at 5:00 a.m. the day the Conference was to begin, packed up for a two- day trip, and walked out on a misty spring morning to start an hours-long series of busses from Seattle to Tacoma. As is typical for TBI survivors who have often become confused or missed directions in the past, I was constantly anxious about whether or not I had already taken care of all the small details of the trip. Once there, I made my way through the small downtown core of Tacoma to the hotel where the Conference was to be held, only getting lost and having to re-check directions once. The venue itself was nothing out of the ordinary for the relatively new and wealthy urban centers of the Pacific Northwest, its two towers of rooms reflecting a sea-green light from the midday sun above Tacoma’s shorter office buildings. The building looked sleek and shiny, testament to the region’s prosperity and giving no sign of the precarity faced by so many who would soon attend a conference there. The foyer of the hotel was every bit as prosperous-looking and businesslike as the exterior, and I lined up to check in behind a group of flight attendants who were there for a night’s rest before their next assignment. Various other businesspeople and one couple who was likely on vacation were milling about the lobby;

I saw no immediate indication that the hotel/conference center would soon be the scene of the most important event hosted by the state’s TBI Council. Faced with this ordinary

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scene, I again wondered if I was in the right place or if because of my TBI I had mistaken the location.

My first assurance that I had indeed found the correct venue came when a large group got in line at the reception behind me. Several of their utterances were loud and displayed aphasic or ataxic speech patterns, with which I was intimately familiar. My second hint came when, reassured by the group, I looked for and found a few signs that read “TBI Conference” circumspectly placed to the side of the stairs to the conference center, set discreetly apart from the main hotel. Finally satisfied that I had not mistaken some detail of the Conference, I checked in and headed to my room to unpack, review the schedule for the Conference, and get prepared for all the networking and self-promotion I would need to do over the next two days.

Once in the elevator, as was true during all my rides in the elevator to my room on the 12th floor of the hotel’s West tower, I was accompanied by others who may have been part of the Conference. The snippets of conversation that I overheard were unusually loud, peppered with occasional profanities or overly personal anecdotes that broke

Seattle’s unspoken code of subdued and polite discourse. But I knew from my own experience and research that there are no universal, definite signs of TBI. Moreover, many of the participants in the Conference were not survivors but their significant others or professionals who worked with survivors. The Conference was thus a clear reflection of the reality of TBI: largely invisible, hidden from the view and awareness of those who do not have a personal connection to it, as ambiguous and uncertain as the individuals with whom I rode in the elevator.

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The Conference played out much like other professional conferences I have attended. Presentations were filled with inclusive language, taking into account the diversity and range of injuries, survivors, caregivers, and life circumstances of those in attendance. The first plenary presenter began her talk by exclaiming: “My people, my people! It’s great to be part of this community!” and thereby evoke a sense of inclusion among Conference participants. The effect of this exclamation on the crowd was impossible to decipher, as I wrote in my fieldnotes, though a great many faces that I could see then looked up from their food to regard the speaker. The other plenary speakers gave talks that were directed to the entire diverse audience as if they all belonged to the same group, despite their myriad differences. The breakout sessions were more specific, targeted specifically for adults, professionals, caregivers, military/vets, teen/young adult and those interested in yoga and “The Joy of Art.” Unlike the plenary speaker, the individual sessions seemed designed to highlight the particularity of head injury sequelae rather than develop a sense of common identity among all present.

Indeed, I saw so many individuals of different ages with such dramatically different stories, voices, mannerisms, and the like, all of whom were only related through their connection to TBI that I quickly grew overwhelmed. This was not by accident; it was wholly intended. I do not mean by this that the Council coordinator, who organized the event, set out to overwhelm me and the many other survivors that told me they felt the same. Rather, the event gathered together such a diverse array of individuals to fabricate in them a common identity where one would not otherwise exist. The resulting “imagined community” (Anderson 1983) comprised all individuals who were in some way touched by “TBI” in the sense of head injury: minor, moderate, and severe survivors, their

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caregivers, and all those whose work concerns TBI in some way. All that was required for admission to this collective was to sign up and pay the entrance fee and indicate which of these categories the applicant identified with. It was thus not a natural formation of individuals that lived in a single location, had similar characteristics, or even shared the same interests, as the individuals that make up human communities often do (Joseph

2002).

Arenas/Social Worlds Theory and the TBI “Community”

The biggest drawback to this construction of community is that nothing gathers the diverse participants in a single unifying community identity except for their mutual attendance. As such, it did not square with my anthropological sensibilities about human communities formed around geographical proximity or personal identity (Estroff 1985,

Joseph 2002). However, the deliberate fabrication—in the sense of a creation of something that had not before existed—of community fits solidly within the social worlds/arenas theory of social organization first put forward by Anselm Strauss (1978).

In this section, I will address how the TBI “community” evoked by the Conference makes sense within this framework. After a brief discussion of this “theory/methods package” (Clarke and Star 2008), I continue as Clarke (2005) suggests, with a visual analysis of physical and social worlds/arenas maps of the Conference and conclude with an analysis of the divergence and cooperation of various social worlds that exist within the arena of the Conference. The physical and the interactive projections neatly line up, suggesting that the Conference should itself be analyzed within a social worlds/arenas framework.

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The social worlds/arenas framework allows and accounts for the confusing multiplicity and shifting processes I saw in the Conference. The social worlds that exist within that arena can be any form of social organization centered on a particular discourse on or about TBI. These range from the formal and defined to the emergent and permeable, allowing NGOs and governmental offices to participate as equals in the TBI arena with informal and temporary groupings of survivors. The only fixed rules for social worlds are that they share one or more activities, occur in a single physical or symbolic site, and involve some sort of technology (Strauss 1978: 122), though this technology need not be anything elaborate or what is commonly thought of as technological. Clarke, paraphrasing Shibutani, describes these worlds as defined by “communication or discourse” and not “geography of formal membership” (1991:131). Social worlds can thus take many forms. Some can be emergent and informal while others are well- established, characterized by formal structures, roles, and responsibilities, and the like.

Below I sketch out two maps of the Conference. The first is physical and the second conceptual. In the first map, the Conference is laid out with the plenary presentations and dining tables—where survivors and their significant others sat—on one side, and NGOs, private vendors, and Council representatives on the other. In between these two areas were breakout rooms and buffet tables, where representatives from both sides mingled and discussed TBI over meals and sessions. For the second map, I adopt

Clarke’s (2005) guidelines for social mapping as a way to begin to assess the relevant social groupings that cluster around a given subject. The map highlights these groups’ similarity to each other, survivors and their significant others on the one side and vendors and formal organizations on the other. The two meet in the middle to discuss if the

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vendor’s services or programs align with survivors particular needs and experiences, possibly leading to more formal partnership after the Conference. Importantly, this largely unstructured format allows for social organizations to change according to participants’ changing perspectives. Breaking with the traditional format of arena/social worlds mapping, I include individual survivors and their significant others as dots on the map, indicating how they participate in several social worlds on both the left and right sides of the map. My map is thus well suited to Clarke’s interpretation of this pragmatic framework that “focuses on how people organize themselves and addresses how they do this in the face of others trying to organize themselves and/or the broader structural situations in which they find themselves” (1991: 135).

Figure 1: Physical Layout of the State TBI Conference 2018

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Figure 2: Map of the TBI Arena and Social Worlds at the Conference

When analyzed in a social worlds/arenas framework, each of the social and physical spaces represent unique social worlds within the broader arena instigated by the

Conference. Some social worlds of the Conference were private businesses, established

NGOs, government offices, and professional associations. Their representatives, who were often paid employees, gave out swag and business cards with printed logos, along with brochures and pamphlets describing their services, organizational structures, roles, and the like. Others were more informal support groups, networks of friends and family, and momentary groupings of survivors and their significant others that formed and broke apart after only a few minutes of chatting about TBI together. This rarely rose above the level of survivors’ own narratives, tethering the acronym to our own stories followed by a brief description of our lives “with TBI” and then discussing our overall interest in and

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reasons for attending the Conference. Almost all attendees belonged to several of these groupings throughout the two-day event, giving the Conference a fluid nature as social worlds came into being, intersected, merged, and dissolved. The arena the Conference provides is thus a physical and social space where survivors, their significant others, and those who provide services for them can learn of each other and discuss the acronym.

TBI at this arena thus serves as what social worlds theorists call a “boundary object.” Star and Griessner (1989) first devised the concept, itself based on Strauss’ original Social Worlds/Arenas theory, in an attempt to understand the cooperation of multiple groups that led to the establishment of Berkeley’s Museum of Vertebrate

Zoology in the early 20th century. “Boundary object” explains how individual actors and organizations could hold distinct understandings, rationales for action, and even ways of knowing their subject matter while still interacting and cooperating with each other.

These objects are not analogous to walls that define boundaries between interacting

Social Worlds, but instead exist at the boundaries of multiple worlds that may not otherwise agree with each other. Rather than hinder their progress in whatever mutual endeavors they undertake, this heterogeneity was essential to it, as the boundary objects allowed “cooperative work in the absence of consensus” (Star 2010: 604). Viewing TBI as a boundary object helps explain how the many social worlds in attendance at the

Conference each held different and sometimes incommensurate conceptions of TBI, while that difference did not mar or disturb the Conference. For example, many of the attendees I spoke with indicated that the Conference did indeed make them feel like they were a part of something larger, a “community” of multiple individuals from diverse backgrounds who were all focused on the same thing, TBI. They questioned vendors and

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service providers, sometimes agreeing to meet and continue their discussions later. Some vendors discussed ways to collaborate on their respective projects. Yet these diverse social worlds did not share a common understanding of one of the most foundational concepts of that community: the acronym itself. For some, it was simply a biomedical injury. For others it was also the story of their lives. For others, it was also something they experienced through their loved ones. For still others, it was the reason for their employment. Simply, there were too many possible meanings attached to TBI for the acronym to garner any real consensus or sense of common identity among all participants. TBI, at least as constructed by the Conference, served as an arena-defining boundary object that both connected and distinguished all of the participants who had chosen to attend.

The intended purpose that the Council had laid out for the Conference may have been partly successful. The event did bring together many diverse participants who had some involvement with TBI so that they could discuss it and learn from each other. But many of my informants who had participated in previous conferences did not think that many of those with whom they attended the Conference—especially the vendors—truly understood them or their injuries, let alone shared their values, interests, or goals. These previous conferences had failed to garner any sense of common identity or shared purpose among the survivors, their significant others, and those who work with or for them. Moreover, given how few of my informants participated or expressed interest in the one I intended, it seems far from likely that it served to (re)form or even buttress a true sense of community that represented them. In short, the Conference, overwhelming

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and confusing as it was, may have been meant to form a community, but really only ended up gathering participants into an arena.

TBI and the Brain Injury Community “From Above”

Several other organizations, including the BIAWA, ActiveBrain, and others, held events that mirrored the Conference. Yet their events were not specific to TBI. They instead centered on the more general subject of “brain injury,” including stroke, aneurysm, brain cancer, and all other causes of physical brain damage within its domain.

This grouping is known as “the community”, or more specifically, the “brain injury community,” which I call the BIC. Like at the Conference, the BIC that is invoked at these events is amorphous, shifting, and constructed around a boundary object—physical brain injury as opposed to TBI. In this section, I discuss its function, which is much less of a true “community” that survivors and their significant others form with each other than an arena that is planned and imposed from larger organizations. It is also an imposition “from above,” echoing literature on community development. This BIC-a ultimately constructs its object, the BIC, in ways that fail to resonate with survivors themselves.

BIC events, like the Conference, often garnered sizeable attendance, enticing survivors of all physical brain injuries, their significant others, NGO staff, medical practitioners, and even personal injury lawyers with food, drink, and some sort of enjoyable activity. Along with gathering at local pubs and brewhouses, there were picnics, museum and golf outings, visits to local tourist attractions, and even large budget galas. BrainDance and BIAWA each hosted annual galas alongside numerous other

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events. ActiveBrain hosted a summer barbeque and multiple holiday parties. BrainCell hosted gatherings of students with survivors and their significant others at multiple locations around the city. None of these events had separate breakouts or information sessions, nor did they separate social worlds in physical or conceptual space. The galas and several of the larger events were mostly dedicated to raffling donated items to the highest bidder in silent auctions and sometimes raucous live auctions. Other events did not have as explicit a fundraising purpose, being simply occasions to relax over a pre- paid meal.45

The BIC at these events functioned similar to the TBI arena at the Conference. It did not function as a coherent and supportive social group for survivors, which was what many claimed. Instead, the events served to organize attendees around the concept of brain injury such that they felt inclined to support and fund the host organization, including survivors and their significant others but focusing on wealthy and professional donors. Many of my survivor-informants and their significant others attended these events with me, and we were almost always outnumbered by clinicians, NGO staff, potential and current donors, and the lawyers who represented survivors. Each of these participants was part of some larger social world organized around the boundary object of brain injury. Just like in the Conference, survivors built their own social worlds, some of which were ephemeral and momentary and others of which were more lasting. Yet they equally succeeded at forming the BIC as an arena focused around the boundary object of brain injury and the purpose of securing donations. Thus like the Conference, these attempts at building the BIC succeed at their mission—but not fully. Instead of building

45 Survivors could attend these events for free or a reduced cost. As I both a survivor and researcher, I was often invited to them completely free of charge, though I was asked not to share specific details of them.

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the BIC as a functional and effective community that would support survivors and their significant others, the events establish and re-establish connections between donors and brain injury NGOs, most of which are financial.

The situation is analogous to that of international development, specifically efforts by international political and economic bodies that have come to be popularly known as development “from above.” In this system, international actors devise strategies for change in the economic, environmental, political, or other sectors of poorer countries. These strategies rarely achieved the ends they set for themselves, however

(e.g., Ferguson 1994 and Escobar 1995) because the strategies were not devised by the communities that were to “develop” (Mosse 2005). Members of the communities that were supposed to benefit from these efforts rarely understood or assented to the changes that were planned and implemented by donor agencies, changes that supported international economic systems, structures, and capital far more than the purported beneficiaries (Rist 2008, Escobar 1995).

Similarly, the BIC in Seattle is largely constructed and implemented by outside organizations like the Council and brain injury NGOs. These organizations may try to listen to survivors and their significant others in devising and implementing their activities, but they remain beholden to outside interests for funding and, in the case of the

Council, state sanction of their actions. The BIC as sponsored by these events is thus an imposition “from above.” This community, which I term BIC-a, can realize some successes in terms of connecting survivors with programs and services. But it can also miss or disregard the interests of those that it seeks to help, pursuing policies and

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programs that are mere window dressing on the real problems faced by survivors or only serve to benefit the organizations and their funding sources.

Support Groups, Biosocial Identity, and Brain Injury as Community “From Below”

The reality of the BIC-a, as an imposition from the outside rather than a natural or organic community, was not lost on my key informant, Paul. As the leader of Seattle’s most active support groups for Brain Injury survivors, Paul had grown dissatisfied with the Council, BIAWA, and other formal organizations that make up the BIC-a. In response, he facilitated his groups independently of state, NGO, or professional assistance or influence. In this section, I will analyze these distinctly biosocial groups

(Rabinow 1996) as another form of community. This second version of the BIC comprises diverse survivors of all types of brain injuries and their significant others, each of whose lives are distinct from each other’s—except for their presence in the groups. At group meetings, they gather together to share food and fellowship, discuss their particular stories, and teach each other the strategies and services they use to get by and even thrive in their daily lives, creating their shared identity through their sociality. Through this brief analysis of what I again analogize to development studies to name the BIC “from below” (BIC-b), I demonstrate how its vision of community is related to but distinct from the BIC-a’s, further multiplying and blurring the meaning of TBI.

To begin, the groups would not exist such as they are without their facilitator.

Paul, himself a stroke survivor, is a short, overweight, and bald Filipino-American with a grizzled goatee surrounding a ready smile. Paul is garrulous and loves to joke about his frequent memory slips and other stroke-related sequelae. He proudly boasts of being

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overly emotional, claiming, “I cry easy” many times when we met at the café and cupcake bakery he calls “my office.” I saw Paul tear up multiple times during fieldwork, both in empathic concern for his group members’ hardships and pride at how they celebrated each other’s lives. He angers quickly when defending his group members as well, a protection which he extended to me while I was in the field.

Paul has a distinct way of speaking about the particularity of brain injury, best summed up by a phrase he repeats often during any conversation: “And the other thing is…” The phrase functions like a verbal comma, after which he can qualify or amend and expand on what brain injury can mean in survivors’ daily lives. For Paul, there is always another “thing” to be added to survivor’s stories. The exact meaning of brain injury is never set but is temporarily fleshed out with the anecdotes, asides, and other “things” with which he follows the phrase.

My key informant was not always as welcoming, outgoing, and charismatic as when I met him, he would tell me. Six years earlier, he suffered a major stroke that required inpatient medical care for several weeks. As was the case with most TBI survivors, after he was discharged from the hospital, Paul lost most aspects of his pre- injury life. He was unable to work due to a variety of lasting neurological impairments and moved in with his sister. He withdrew from his former social life, losing contact with most of his friends and acquaintances. Feeling cut off from his pre-stroke social worlds, he began attending monthly brain injury support groups at a local hospital. He met Faye at one of these groups following her first TBI, and the two of them formed a fast and close friendship. They helped each other learn to live “with” their respective brain injuries, calling to check in with each other daily. The relationship was one that both Paul

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and Faye assert frequently as central to their lives in the years since they met. The two continue to speak regularly on the phone, meet for coffee or lunch, and help each other keep track of “little things” like remembering appointments, finding car keys, and the like.

Thus, when the facilitator of the support group they had been attending stepped down and asked for volunteers to take over the facilitator role, Paul and Faye quickly submitted their names as potential co-facilitators. They were accepted by the hospital who oversaw the groups at the time and trained as facilitators by the Council. Once the old facilitator left, they began making the groups their own. They started three new groups, one to be held each Thursday of the month at a new location. Only the first would be held at the original hospital, while Paul and Faye took over a group that was held at another of Seattle’s major hospital and started two new groups in the city’s famously ubiquitous coffeeshops. For some, these new locations were a blessing. Many survivors were not comfortable in locations they associated with painful memories of injury and recovery; others found the casual environment of a café too loud, raucous, or public. As

Paul later told me, holding groups at diverse locations accounted for the other “things” at play in survivors’ attendance at specific groups. The groups also forced Paul to leave home and helped him develop a new social life that fit what he calls his life “with stroke.” For reasons that we will return to shortly, Paul assumed full leadership of the groups in 2016, and though Faye began attending them again at the end of my fieldwork,

Paul continued in that role throughout 2018.

I first began attending Paul’s groups just after my second year of graduate studies, long before devising the research described here. The idea of studying TBI was far from

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my intended career path at the time. Instead, I had hoped to meet others who had suffered the same injury as I, believing that I could learn from them about the injury I thought we all shared. The very first meeting quickly disabused me of that notion, however. Several participants had not even had head injuries. They were instead survivors of other forms of physical brain injury, like Paul’s stroke, and we seemed to have little in common outside of our status as brain injury survivors. As Paul mentioned through the use his verbal comma, which I noted at that very first meeting, there were always other “things” about each survivor’s brain injury, including my own, to be discussed. Regardless, by the end of the meeting, I was inspired enough by the warm sense of welcome and inclusion to return the next week. Ultimately, meeting with what seemed like a random and motley assortment of brain damaged individuals, most of whom were far older than I was and thus had little in common with me, became a fundamental part of my life. I continue to attend the groups whenever I am in Seattle to visit my parents, and even today we speak regularly in virtual spaces. I did not realize at the time, but this was the beginning of my formation of a new identity, one that was always tethered to my initial injury but also built on my social ties to the group.

By the time I had begun formal fieldwork with them, the groups all followed the same format. First, Paul puts out food that he has either prepared himself or purchased for the group, in part to support several members who were deeply impoverished and ate better at the Thursday groups than other days of the week. After participants eat, the group officially begins with Paul introducing himself, adhering closely to what I discuss in Chapter 3 as “narrative particularity.” He first explains his status as a stroke survivor and follows with a small narrative about his time in the hospital and recovery. Paul then

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mentions what he has been up to since the last meeting. The details of his stories can often become quite personal, involving relations with his roommate, interactions with other support group members or his sisters, and even his hopes and dreams for his own future. Paul’s narrative usually concludes with a small homily about “staying positive” even in the face of adversity. All told, this short presentation only takes two to three minutes. My key informant follows his narrative with ground rules for the meeting: 1) everyone is allowed up to five minutes to “share,” introducing themselves and their brain injuries, explaining their reasons for attending the group, and bringing up recent events or concerns that they would like to share or on which they would like advice; 2) negative words or allegations against other group members are not allowed; 3) subjects should be appropriate for public discussion, avoiding topics of sex, violence, or crime. Paul also makes special note that if attendees do not wish to “share” for any reason, that is up to them. The rules are rarely enforced though Paul will occasionally ask individuals to curtail their presentations when they go over the five-minute limit. He also will give new members more than five minutes, as they often have many questions for the group about brain injuries, the strategies and services they use in their daily lives, and public services and other aspects of TBI’s complex body politic in Seattle. By the time new group members attend multiple meetings, they seem to have internalized this format and follow it without prompting.

Participants proceed around the room, “sharing” about their injuries, their lives, and their questions and concerns. They almost always follow the same format as Paul, practicing and perfecting their own narrative performances and finishing by asking the

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group for comment or advice if needed.46 This advice usually addresses some form of precarity that the survivor is facing. When group participants seek and give advice in this way, they are in many ways serving as other survivors’ significant others. Some may even agree to meet and help others out after the group ends, spending time together and serving as significant others outside of the group. These interactions in the group often revolve around problems with the vast body politic of TBI mentioned in the last chapter.

The process can take two hours when there are many people, and there were a few times when I was not allowed to speak because I was a regular attendee and most of those present already knew my story. Most groups followed the same pattern—but owing to their different makeup never had the same character and only rarely the same subjects.

There was always another “thing” with each group that kept it distinct from the others, whether it arose from the new setting offered by the rotating location, new participants, new subjects for group discussion, new food prepared by Paul or one of the other members, or any number of reasons. Each of these “other things” can themselves represent what survivors’ brain injuries mean, allowing participants to develop bonds around their shared experiences of precarity, relations with their significant others, and strategies for sharing their narratives, regardless of the differences between their diagnoses.

Participants in Paul’s groups interacted similarly outside of formal support groups. Some other groups during my fieldwork consisted of only me, Paul, and one other member. When this happened, we simply left and went to a nearby café to talk

46 This process is not accidental, as Paul and Faye both recognize the importance of narrative in survivors acquiring needed supports. This is a common feature of support groups, as reported by anthropologists such as Martin (2008) and other scholars such as Rose (2009) who have studied them.

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about city life, our work with others in “the community,” or other things in our own lives.

Yet regardless of the content, the underlying process remained the same, developing a common identity around sharing food, stories, and strategies for living “with” their respective injuries. Other times, Paul or another group member would arrange a lunchtime outing, but these meetings all resembled each other.

For one such outing in early September, organized by both Paul and Faye, we met at a local park overlooking the city to enjoy a Seattle specialty: fried halibut ’n’ chips.

The late summer sun was warm and bright, reflecting off cars parked on the street behind us and the flaxen grasses on the hillside in front us as they waved lazily in the light breeze. I had just arrived with Dave, who was not a member of the groups but had eagerly accepted my invitation to come when I mentioned it during our interview that morning. I was unable to tell the group members about my interview with Dave, but once he introduced himself as a severe TBI survivor, the group welcomed him without further confirmation of his status.

Once we had arrived, Paul took three grey cartons out a greasy brown paper bag and set them on the concrete. He asked that we pair up and take one carton, each of which contained several pieces of golden fried halibut on top of a bed of greasy fries. We settled into three groups on benches in the small park, and Paul came around to give out small containers of tartar sauce and ketchup. Dave, a lanky and healthy young man, was immediately whisked away by other group members and so I sat with Faye. She let me eat two pieces of fish as I was younger, bigger, and as she said “will probably eat more than I” as we spoke about my research, the difficulties I was facing as both a survivor and ethnographer, and her having returned to the groups after a long absence. Dave had to

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leave early but promised to attend more events in the future, saying he was happy to have discovered a group of people that was “like me.” The rest of us left a half-hour later, some sitting to wait for their Access shuttle to show, Faye getting into her car while her husband waved at us through the open window, and Paul and I catching busses back to our respective apartments. Nothing of note happened in the group; the meeting only served to gather us together over good food so that we could share a pleasant and enjoyable afternoon together.

Through this standardized process of gathering, eating, and “sharing,” the groups teach survivors in attendance how to be brain injury survivors regardless of the particularities of their brain injuries and the “other things” that differentiate them from each other (e.g., Marshland 2012, Martin 2008, Dunn 2014). Paul’s groups thus fall under recent scholarship on “biosociality.” Rabinow (1996) originally developed the concept as a pun on sociobiology, the idea that human biology and genetic inheritance lead directly into social concepts of race and class (Hacking 2006). In contrast, in its original and most common framing, biosociality indicates the deliberate socialization of those with similar genetic makeup (Rabinow 1996, Taussig et al. 2003, Lock and Nguyen 2010). Recent studies, recognizing the value of the biosociality concept, have since broadened the term and made it more applicable to the BIC-b. More contemporary accounts include acquired bodily conditions (Rose 2009), health social movements (Brown et al. 2004), and even disabled persons’ groups (Friedner 2010, Friend 2014). These biosocial groups help individuals learn to live with biological conditions and help spread information about their shared conditions (Wahlberg and Rose 2015). They also train participants in how to present their injuries (Martin 2008, Dunn 2014), spreading knowledge and practices of

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otherwise poorly understood biomedical conditions. Paul’s groups likewise teach survivors how to construct and transmit their stories. Moreover, numerous recent studies have indicated how more esoteric types of knowledge, such as knowledge of the brain, brain function, and brain dysfunction spread through these groups (Rose and Abi-Rached

2013, Dumit 2004, Lende 2013). Paul’s groups are no exception, as members discuss and propagate otherwise esoteric clinical and neurological knowledge of their own particular injuries. Group members often respond to others’ stories with “Oh yeah, I have that, too!” or “But what about this?” further solidifying what group members identify as TBI.

Though many members often have lives as far apart as any in the US today—both the successful sports coach Terry and restricted former nurse Olivia regularly participate in the groups—they often talk about their conditions and lives “with brain injury” as if they are the same.

One prominent and frequently noted aspect of these biosocial groups is that they are not only based on shared biological characteristics; they also help their members develop a common identity. Rabinow himself described this as one of the primary results of these groups (1996), as scholars have noted in support groups around the world (Guell

2011, Young 2016). Yet, the identity inspired by Paul’s groups has to do more with participants shared sociality (Marshland 2012) than any specific of biomedical risk or even diagnosis that they share (cf. Rabinow 1996, Lock and Nguyen 2010). Like Martin

(2008) found among the Bipolar support groups that she studied and in which she participated, the BIC-b helps its members to better accept their or their loved ones’ conditions. In doing so, it constructs an image of brain injury that reflects the groups’

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collection of diverse and particular experiences. As such, the identity of the BIC-b is always inclusive, characterized by Paul’s verbal comma as much as anything else.

In keeping with this shared but amorphous identity, the membership and makeup of the groups changes every week. New members are continually funneled into the groups from hospitals, brain injury NGOs, and community organizations. Many of these newcomers do not hold the identity of “brain injury survivor” and instead identify with their own particular injuries. Some in Paul’s words might not feel that the groups “are a good fit” for themselves or they might not identify with the broad nature of brain injury identity promoted by the group. Existing members may leave the group after participating in several meeting if they move from the city or state. Others take breaks from the groups. As Paul himself says of his groups’ members fluctuating attendance, “Sometimes they lose interest. Some of them go back to work, they have other commitments, or sometimes they just need a break, you know, or sometimes it can be other people in the group.” Whatever the reason, group members usually leave without penalty or hard feelings, and will almost always be welcomed back without question if they decide to return. Accordingly, attendance at meetings fluctuates repeatedly. No two group makeups are ever the same.

Nor are the groups perfectly harmonious or without significant problems. When they do have problems, Paul exercises his leadership role to control them and sometimes forcibly dissociate members from the group:

In one instance, I actually had to ask somebody to take a break from the group. We had to speak about issues that were going on, and if they were willing to conform—in other words, setting the boundaries. And this person was not willing to conform and I had to ask them to leave. And if they wanted to come back we would have them come back, speak on my terms, to make sure they would be ok with everybody else, and I would have to let everybody else know. And the other thing is, again, I’m not a doctor or a paid

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therapist. There’s different levels. We’re a support group. So, that’s what also some people are expecting from a support group. I’m not, you know, I really don’t particularly like to say not or anything negative, but again I’m not a professional therapist or anything like that.

In this sense, while Paul is not central to the content of group meetings, he maintains a loose control over them by excluding members who break his simple rules.

As this suggests, Paul’s groups, though organized for and seeking to benefit any brain injury survivor that attends them, are Paul’s groups. He and Faye may have taken over the first group from the hospital and co-led them for several years, but at the time of my fieldwork due to circumstances I will explain below, Paul ran them by himself. This does not stand in the way of the groups’ biosociality, however. Biosocial groups, though they are organized for people who share biomedical diagnoses, are organized by certain individuals for specific purposes that those individuals may or may not share with the group (Guell 2011). In Paul’s case, that specific purpose is to be inclusive and open, always acknowledging other possible “things” to bring up.

Finally, Paul and other group members actively try to build a shared sense of identity by planning and meeting up with each other at more formal events, such as the

Global Brain Injury Picnic held at Cheyenne’s apartment building, the park outing arranged by Paul and Faye, and Paul’s Christmas Tree decorating get-together at his and his roommate’s apartment a few days before I left the field. Through these events and numerous informal gatherings, the BIC-b participants are not merely members of the same support group but a distinct community of individuals. They may have little in common outside of having sustained a physical brain injury at some point in the pant, but through meeting up with each other, sharing food and fellowship, and trading advice on diverse subjects repeatedly, they empower themselves and their fellow survivors to more

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skillfully and successfully navigate through the highly fluid social environment of TBI in the city. Through this process, they not only construct but come to live the identity of members of the BIC-b.

The BIC-b, led by a survivor and gathering together survivors to share strategies to improve the precarity of their lives and conditions “with brain injury” in Seattle, is clearly analogous to what international development scholars have termed development

“from below”—that is, driven by and directed to the local and community level (Mosse

2005). Likewise, Paul’s groups began under the aegis of a large hospital, and he himself was trained in support group facilitation by the Council and BIAWA, two central organizers of the BIC-a. Once in charge, however, Paul quickly re-made the groups through his own embodied understanding of brain injury. Under his facilitation, the groups became distinctly biosocial in the same ways as Martin’s (2008) bipolar support groups are biosocial. Like them, BIC-b participants create lasting social connections with each other, come to see how others share their individual experiences, and create a

“fabric of relatedness” with each other that comes to define their identities not as TBI survivors or stroke survivors but as brain injury survivors (Martin 2008: 144-6).

Moreover, the groups are, like brain injuries, always shifting and changing. Current members leave, new members join, former members return, and the new members propose new projects and events, just as Faye did in arranging the park outing.

As such, Paul’s groups pose a distinctly biosocial form of community that differs from the BIC-a sponsored by the larger organizations. They may reach a vastly smaller audience than the BIC-a, one that is constantly changing in makeup and setting, but even with this changeability it presents its few members with a kind of comforting “haven”

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(Martin 2008: 147) that allows them to identify with one another through shared sociality rather than shared symptom or embodiment. The BIC-b thus offers a distinct kind of community, one “from below,” from survivors themselves, in response to the “other things” that come up in their lives.

The Split

These two visions of community, one “from above” and the other “from below,” exist in a constant state of tension that occasionally come to a head. I played a secondary part in one such event. While I was in Seattle on medical leave in May of 2016, Paul and

Faye quickly plugged me into their own network when I arrived, which at that time revolved around several of the brain injury NGOs mentioned in the last chapter. I also attended their weekly support groups, each following Volunteer Thursday activities a local brain injury NGO. The volunteering was far less well attended than the Support

Groups, but certain individuals could most often be counted on to be there, buttressing the BIC-a’s version of community. Of these regular volunteers, Faye was the most diligent, and her warm smile and usually-accepting attitude defined the situation.

Thus it was no surprise that, the second Thursday of my time in the city, Faye was in attendance. As we set about undertaking the tasks that the organization had set for us, she seemed less cheerful than usual. Of course, as a survivor of not one but two moderate-severe TBIs, such behavior was unsurprising. It may also have had something to do with my own mood. Not only had I not yet calmed down from the massive stresses that had led doctors in Tucson to suggest that I take a break from my program, but I had not slept well the night before. Dealing with chronic sleep problems and ensuing mood

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disturbances were key to my experience “with TBI.” I thus adopted my usual strategy of keeping quiet and hoping that no one would notice or condemn my sullen comportment.

Faye of course livened my spirits, but it was simply not enough for me to overcome my internal anger and frustration.

Things changed rather abruptly, however, as a survivor and staff member at the

NGO rather loudly burst into the room and started greeting volunteers that she had not seen recently. This did not include me, and not only did I notice but I rather resented the woman for it. Her manner was quite brusque and much louder than is normal for the taciturn and subdued Seattle office culture. But in contradistinction to the other survivors sitting around the table, the newcomer’s manner was quite confident. She proceeded to relate how she had been invited to several locations around the country to give talks about TBI for survivors. She then looked directly at me and said in the same brusque manner in which she had been speaking: “You’re new. Who the heck are you and what are you doing here?” The actual question she put to me may have been less off-putting than I remember, but such was my state that it is stored in my memory as such. I replied in a curt and quiet voice that I intended to betray volumes of opprobrium, “Austin. Not new.” She responded, “Well, you’re new to me. Do you have a TBI?” to which I responded angrily, “I’ve been coming here every summer for years. And yes I had a very severe TBI.” She abruptly turned to Faye and the other volunteers, ignoring me, and left soon afterwards, as our conversation had clearly soured the mood.

After the woman left the room, my mood improved such that I was joking with

Faye and the other members. When it came time to catch the bus to a lunchtime support group at a local bar that was a 20-minute walk away, I told them that I would see them

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there and left for a walk in the glorious Seattle summer weather. When I arrived, I sat at the usual spot and waited for other members to come, although of the morning’s volunteers only Olivia showed up. I do not remember who else was in attendance, but it was relatively small, in direct contrast to my last time at the same group, when I remember several more coming for the free food. When I asked Olivia about Faye, she replied that she didn’t know but did not think Faye was coming. I did not think anything of it and resolved to ask about it at the next week’s group.

What happened, I discovered years later, was a single interaction that caused much wider ripples in the community. Faye later told me that just after I left she was

“verbally assaulted” in the bathroom by the same survivor who had disturbed the conversation earlier. Faye only says that she claimed that Faye was “worthless” without giving an explanation. Although I could not confirm this with the NGO, I did years later speak to Olivia about the incident. She had also been in the bathroom, although she had been sitting covertly in a closed stall. She tells of hearing the event in both shock and horror, more or less confirming Faye’s account. But, as she was in a closed stall going to the bathroom at the time, she could not intervene.

The immediate result of this event was a split between all branches of the BIC-a and the Support Groups led by Faye and Paul that never fully resolved. Faye withdrew from the groups for two years. Paul, who had to lead all support groups on his own, began announcing that, due to “community interest,” he would be moving the second-

Thursday-of-the-month’s support group (which had been run by the BIC-a but which he was now taking over) to a “more central” location in the heart of Downtown Seattle.

Meanwhile the BIC-a’s support group continued to be held at the same bar at the same

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time on the second Thursday of the month. Though the two locations were only about 10 blocks apart, the vast majority of the participants were never able to attend both and thus had to choose between them. Moreover, Paul stopped actively promoting group members’ participation in BIC-a events, volunteering with local NGOs, and even certain

BIC-a events like the state Conference. Over the next few months, BIC-b member attendance at various BIC-a events would plummet. Volunteer Thursdays switched to only once-a-month, and participation remained extremely low throughout my fieldwork.

Ultimately, although the bathroom confrontation was only a single dispute between two survivors, it had strong and at times severe repercussions throughout both branches of

Seattle’s BIC. Not only had the largest and most prolific support groups in the city been effectively cut off from NGOs serving survivors in the city and state, but the fallout also severed ties between the groups and the various political organizations set up to serve them.

Participation in Paul’s Downtown group remained fairly steady at between 3 and

10 participants following this. The groups that I described above as the BIC-b stopped receiving council funds and no longer provided regular lunches that were paid for by government funds. Rather, Paul himself began cooking or buying local takeout for the groups, paying with his own funds. Faye was no longer available to help him co-facilitate the groups nor could she take over on days when he was busy or lacked the necessary energy and motivation to facilitate. Other groups sprang up in the city in response, and ones that had already existed rose in prominence, but these were never had as wide of a reach as the ones run by Paul and Faye. Years later, Faye did return to the groups, but only momentarily and not in the same capacity as she had before the events just

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described. Moreover, as he continued to recover from his stroke, Paul began pursuing other interests that had nothing to do with the support groups. Specifically, he began walking his friends’ and associates’ dogs as a way to gain money despite being unable to work due to his impairments. The situation of Paul’s groups during my fieldwork was thus one that was far less active than it had been when I first planned The Social Life of

TBI years earlier.

As the strain of handling four monthly Support Groups all by himself entered its second year, Paul acquired a second counterpart in Cheyenne. Like Faye, Cheyenne is a

TBI survivor. But she was not trained by the state TBI Council, had no ties to the BIC-a, and was not a formally sanctioned support group facilitator. She hails from South Dakota and has a much more direct and brusque style of facilitation. She frequently peppers her group comments with tales of how she had put a restraining order on her mother and how she was constantly helping her many homeless and unemployed friends in the city acquire and use technology, saying “And I’m the one with a brain injury!” Cheyenne does occasionally ask others for help, and she expects survivors to do the same, but she cautions them never to count on that assistance. The approach clashes with Paul’s more forgiving and practical approach of “moving forward,” but it holds the same goal of helping survivors to help themselves without continuing intervention from TBI’s body politic. Cheyenne’s co-facilitation of the groups was short-lived and she had already stopped attending the groups by the end of my fieldwork. But her short tenure furthered

Paul’s attempts to sever the groups from the influence or assistance of the BIC-a.

This split is an example of how two ideas and conceptions of a supposedly single community form, circulate, and clash, sending ripples throughout the population. The

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initial exchange between Faye and the NGO staff member likely had nothing to do with the differences between the two forms of the BIC and was just a personal dispute.

However, their confrontation resulted in the formal split between Paul’s groups, which make up the majority of Seattle’s support groups for TBI and other brain injury survivors, and the largest organizations serving brain injury survivors in the city. Once separated, the two maintained their contradistinction, dividing survivors into two separate camps, even as the majority had no understanding of the events that had separated them or even that the separation existed.

This split was not an isolated incident. A similar conflict occurred nationally in

2007. At the time, the first national brain injury organization, the Brain Injury

Association of America (BIAA), reportedly contained two general camps: one mostly comprised of survivors and their caregivers and significant others that wanted to support individual survivors outside of biomedical and rehabilitative settings and another that wanted to focus the organization’s time and energy on providing biomedical and day services for survivors as well as push for national policy developments like the National

TBI Act of 199647 and the four ensuing Amendments. These two camps were largely geographically distinct, as well. The survivor-oriented group consisted of BIAA members and directors that were all based in the Western half of the country, including the

BIAWA, while the latter was made up of organizations from Eastern states.48

47 The Original Act has had several amendments made over the 24 years since its initial passage. There are links to these through the US Congress (https://www.congress.gov/congressional-report/104th- congress/house-report/652/1). However, these laws had minimal effect on survivors in the city of Seattle, none of whom even knew of their existence. Moreover, neither the Council or any of the NGOs with I worked during my fieldwork mentioned using the laws and its amendments as guidance in devising their own policies and programs. Their impact thus was minimal on the embodied and social construction of TBI in the city of Seattle. 48 California was the only exception to this geographical division, as it sided with the policy-oriented branch.

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Just like in Seattle’s “split”, these two camps—one survivor-oriented, the other policy-oriented—were uneasily united until their sundering. According to staff at the

BIAWA:

It’s unfortunate. I don’t think either [the Association or the Alliance] is as robust an organization as it could be if we were combined. Um, there were some of the larger brain injury associations, and I would say some of the more robust, really providing a lot of large services, that there were some changes being made at BIA of America—which I think the big ones included that the states would no longer have voting rights, that we would still be providing money to the organization but there would be no voting right, that we saw BIAA moving more towards being a political lobby group for the for-profit rehab providers, and they were establishing a separate business organization. And they basically said some of the money that we were giving as state organizations, instead of going back to serve individuals, it would go into this lobbying side. We were like, ‘That’s not…’—they have enough money! They’re making money. And some of the most viable large program states around wanted [a representative on the BIA’s advisory board], one individual who was an extremely intelligent gentleman, very easy going, really pragmatic. And the goal was, if he had been nominated to be on the advisory board, that probably would have acquiesced all the organizations, to at least have that voice in there and to have him be there was going to really be all that we were asking for. He was not voted in. They really like made the concerted effort to make sure he was not voted in, and after that, the states moved [to form their own organization, the US Brain Injury Alliance (USBIA)].

The BIAA-USBIA split occurred over a single event and resulted in the more survivor- oriented camp choosing to become its own new organization. By doing so, it too lost connections to the political connections, resources, and experience of the original organization. Each of these conflicts and resulting fractures in organizations that claim to represent the brain injury community reveals how that community is itself uncertain and shifting. Just as with the members in Paul’s groups, there are always “other things” that come up for the community to deal with, as the exact meaning of brain injuries depend on survivors’ own particular concerns, social contexts, and the surrounding political environments.

Ultimately, there is thus no single, robust, and solid form of the TBI community.

It is instead incorporated into the broader and more open construction of the BIC,

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granting access to their larger resource bases and possibilities for differences and struggles with other members. But, as is clearly demonstrated in both splits above, parties in that community can and do occasionally clash with far-reaching results that are rarely if ever understood by those who bear them. As both Faye and my policy informant said when I asked them about their respective splits, the fractures clearly limit each side’s functioning. Like members in Paul’s groups, the many state organizations that formed the

U.S. Brain Injury Alliance became confused about to the specific purposes and breadth of their communities following the rift. Survivors became disconnected from supports and services that come from cooperation between the survivor-focused and policy-focused branches of the community.

The brain injury community is thus characterized by a fluid and amorphous nature, one that holds an uncertain identity, just like its members. That identity remains tethered to the physical reality of brain injury but fractured by the uncertain and multiple nature of exactly what that means afterwards. This constant tension and feuding between both BIC “from above” and “from below” exactly mirrors what occurs in situations of international development. Just as the former is planned and directed from governmental and NGO offices, led by professionals with little direct connection to those they work with, international development organizations are rarely based in the countries or communities on whom they ostensibly work. Local actors, in both Seattle’s BIC and developing communities, do not have a voice in the larger organizations and rarely know or communicate with those who do. The two sides engage in activities that are not harmonized with each other and can come into open conflict that hampers the projects and activities of all involved. Further, the individual members who are supposed to

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benefit from all of these activities, brain injury survivors and their significant others on the one hand and developing communities and their inhabitants on the other, may be and often are ignored and left to their own devices. In international development, the result of the split between development “from above” and “from below” results in stagnation that continues to suppress the well-being of those that live in poorer communities of the world. With brain injury, the conflict ends up casting survivors already living precariously into fluid and uncertain situation without steady and reliable and coordinated help from either version of the BIC.

Navigating Fluid Community

Brain Injury survivors, including TBI survivors, are left to navigate through this tumultuous and amorphous social environment on their own. The social terrain through which they navigate is more akin to a constantly shifting, fluid seascape than a stable and predictable landscape (Vigh 2009). Navigation, in this sense,

…designates motion within fluid and changeable matter. The concept, in other words, highlights motion within motion; it is the act of moving in an environment that is wavering and unsettled, and when used to illuminate social life it directs our attention to the fact that we move in social environments of actors and actants, individuals and institutions, that engage and move us as we move along (Vigh 2009: 420).

The nautical metaphor of navigation is uniquely suited to life within a port city as storied as Seattle. It is also appropriate to survivors who, due to their complexly embodied experiences, live with constantly shifting circumstances that vary widely from context to context. Both the BIC-a and the BIC-b attempt to help survivors, whose lives are perched between well-being and disaster, navigate in the city’s often-precarious social environment. In the uncertain and constantly shifting social environment that followed

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the split, navigation came to define the experience of membership the brain injury community.

Both sides of the BIC responded to this in several ways. To begin with, through

“sharing,” Paul’s groups help survivors learn how to more effectively narrate their particular experiences as a way of justifying their needs for understanding or accommodation from others—in other words, to tether their actions and behaviors to their injuries in their interactions with others. Paul often states as much during his introductory remarks to his groups. He also exhorts them to share as many details of their experiences as they are willing to, including the strategies they used and outcomes they experienced in dealing with their problems. By hearing other members’ stories, participants learned new strategies to integrate into their daily lives to avoid or emerge from the worst of the precarious circumstances that troubled so many of them in the city.

For example, June told me how she had started attending the groups while she was still homeless. Not having any connections to the BIC-a and BIC-b before I met her during fieldwork, she had no personal connection to “the split.” She was able to ask both

Paul’s groups and the BIAWA and other representatives of the BIC-a for suggestions and assistance in gaining and keeping public housing, finding new ways to save money and support herself on her meager income, and keeping off the Seattle streets that had been her home for the previous four years. She attributes their advice to how she has been able to find and keep her housing during the years after I left the field. June is thus someone who was able to navigate the tempestuous social environment of the BIC in Seattle, using both sides’ various supports to improve her life.

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Moreover, Paul requests that participants bring their significant others to group meetings, insisting as did so many of my informants that they also live “with TBI.”

Indeed, survivors as well as their significant others spoke in interviews about the groups—and the biosocial community that they formed—as important parts of their lives

“with TBI.” For them, the groups helped them better understand and adapt their behaviors to improve their lives.

This fluid situation is not always beneficial, however. Because attendance at Paul’s groups is a choice participants make, those who do not or cannot do so see little benefit from it. They are instead left to depend on the larger BIC-a, which does not always have their best interests in mind. For example, those who attended ActiveBrain for their daily activities were left with no recourse when it was surreptitiously closed due to its funding being cut by the Council. Survivors like Eric have significant others (for him, his mother) who could help navigate—both metaphorically and literally—to other programs and services. Janice, however, did not have anyone to help her find new social programs when this happened. She would not attend Paul’s groups, and other groups like those led by Cheryl and the university students held meetings and events much less frequently.

Since ActiveBrain shut down, soon after I left the field, she has easily and frequently become confused, unable to accomplish daily tasks like buying groceries and cleaning her small apartment. She feels mistreated by representatives of the BIC-a, most of whom are not themselves survivors, and does not know where or how to navigate to find fellowship and support. Peter, for various reasons, chose to leave Paul’s groups as well as the organizations of the BIC-a. I have not heard from him since our initial interview, and

Paul and several others do not know how he will get by on his own in the city. These and

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the many other survivors that are not a part of the BIC-b, are loosely—if at all—affiliated with the BIC-a, and have few significant others on whom to depend. They are figuratively cast adrift in a precarious social environment that, as I described in Chapter

5, can be dangerous and even deadly.

Conclusion

TBI-as-community is born in a tumultuous social environment. It takes on a social life and grows, changing as survivors, their significant others, and policymakers and

NGO staff introduce “other things” to it and change their styles and strategies navigation through the fluid environment of the BIC. This final meaning of the acronym that I discuss in this dissertation may be the most removed from the event that gives the acronym its name. It is tied to and conflated with numerous other types of brain injuries.

But in many ways, this blending of the two is appropriate: both are seemingly simple yet not, shifting, beset with competing influences and actors, and carrying severe consequences for some while benefitting others. Neither is a natural or stable form of community, such as that which anthropologists have long produced in their analyses.

Nor is the BIC a panacea for the many social problems proposed faced by its members. It instead exists as multiple, imposed by government and NGOs on the one hand, and built by survivors and their significant others on the other. The BIC is fluid and shifting, comprised of social worlds and biosocial organizations of all types of brain injuries. At times, such as with survivors that clash with other participants in the BIC-a or

BIC-b, this fluid community can prove harmful to those it claims to help. Further

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research needs to address the troubling stories like those of Janice and Eric, who were effectively abandoned by the BIC when they were unwilling or unable to attend BIC evets. Regardless, TBI’s body politic, the Council, and other representatives of the BIC-a will continue to push for the formation of groups like Paul’s groups as a potential solution to the precarious life of TBI. And presumably more splits will occur that will further muddy the waters in which survivors and their significant others navigate to survive.

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Chapter 7 Conclusion: The Meaning of Multiplicity

Introduction: What is the meaning of all this multiplicity?

The end result of my meandering analysis, beginning with the event of a singular injury and ending with the breadth of an amorphous and shifting community is to demonstrate another way that reality is, following Mol (2002), “multiple.” Every meaning of TBI is embodied and constructed by survivors, their significant others, the policymakers and NGO staff who work with them, and all sides of the BIC, even as they all link back to the same thing: physical head injury. They cannot be reduced to those injuries or to their various sequelae, nor can they be fully dissolved one into the other.

The boundaries between these meanings are messy and indistinct, and they may overlap and intersect one another. As such, the acronym that stands for each of these meanings cannot be analyzed except as multiple. Nor can its harmful effects be fully addressed without this understanding.

This central thesis does not contravene or diminish the value of biomedical or psychological knowledge of and treatments for the bodily and personal consequences of head injuries. I and nearly all of my survivor-informants, their significant others, and the policymakers and NGO staff who serve us, extol the physiatrists, rehab therapists, and counselors who helped us in our rehabilitation and rehabituation. Our lives today depend on the treatments clinicians administered in the weeks and months following our injuries.

Terry credits his rehab team with the unusual strength and rapidity of his return to a kind

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of “normal” life, pursuing his college education within a year of leaving the hospital. He made a point to go back to the rehab hospital where he was treated, saying “Later on, I went back and thanked every single person that I could that helped me with my recovery.

I went back to the hospital, went back to the rehab center, went back to the doctors. It was important to me because they all helped me with my journey.” Charles continually fights to reenter the medical system. He was not able to afford outpatient rehab when he survived his initial head injury and he insists that they can help with the impairments he experiences today. Faye, now several years after completing both her rehab and the

Model System study that inspired her to hold her own event in Seattle, thanks them

“every day.” Even I continued to rely on and see the same rehab psychologist that treated me during my medical leave throughout my fieldwork. The counseling I received acted as a necessary support to help me through the personal discomfort of conducting intensive ethnographic research with my “community” in my own hometown.

However, the TBI that I have discussed in this dissertation is something else.

Though it is always tethered to the medical-political consensus I presented at the beginning of my analysis, the new framings and particular details that TBI takes on in its social life lead it far beyond that original meaning. Each new meaning to the acronym influences and feeds back on the others in a loop that has visible and potentially drastic consequences for individual and collective bodies. Thus in its social life, TBI is more than a medical concern; it becomes both social and political, shifting and changing as its diverse meanings interact, amplify, and minimize each other, and sometimes produce entirely new meanings that are not covered in my analysis. These further meanings may

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not even involve survivors at all, such as scientific and popular conversations about the possibilities of the human brain and how it relates to social life.49

Ultimately, the multiplicity of these distinct constructions of the same acronym most usefully highlights and helps to explain the complexities of many of my informants’ diverse lives and experiences. According to their narrative, James and his wife would never have found or been accepted at the luxurious and dynamic assisted living facility they are in if he had not been a survivor. At the center, James can use his relative youth to help others. Eric’s TBI would have limited his mother’s availability to work, requiring him to live in an Assisted Living facility so that she could work. Evelyn has continued to work beyond retirement age to help support his residence and pay for the trips that they take together to ActiveBrain and other TBI-related activities around the state. June’s cognitive and emotional issues led her to become dependent on her husband and lose her housing when he left her. She then met Paul, who put her in touch with the BIAWA to help her find housing. Paul himself did not sustain a head injury, but as a stroke survivor heads a community that at times is known as the BIC and at others the TBI community.

Each of these uses of the acronym is distinct. Through its complex multiplicity, TBI establishes its presence and influence in many arenas and social worlds throughout the city of Seattle. It touches many more lives than just those of survivors, playing a prominent role in the city’s social and political life despite being largely unknown.

49 These conversations are numerous, as mentioned in the introduction, found in academic journals, neuroscience departments and medical schools, and clinics and laboratories that throughout the world.

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What to Make of It

The theoretical implications of conceptualizing TBI as a multiple social object are far-reaching. The multiplicity that I have traced in TBI seems likely to be a fundamental part of what Wahlberg (2009) terms “morbid living.” That is, I suspect that TBI as a complexly embodied bodily condition with meanings that are born in social and political bodies and interactions resembles other chronic bodily and health conditions.

Neurological conditions and related disabilities like autism surely have similar social lives, as do chronic neurological diseases like multiple sclerosis, Parkinson’s, and

Alzheimer’s. The same processes have featured in more recent medical anthropological analysis of diabetes (Guell 2011), HIV/AIDS (Young 2016), as well as Mol’s (1998,

2002) original study on atherosclerosis. Addressing each of these singular diagnoses as multiple social objects means directing the critical and ethnographic gaze outside of biomedical frameworks, beyond earlier anthropological analyses of the sickness/illness dialectic that are centered on the treatment and experience of individuals. Researchers should instead develop a more pragmatic approach that examines what the conditions come to mean in diverse contexts outside the walls of the clinic (e.g., Young 2016).

Studies should attempt to understand how bodily health conditions themselves can be the basis for multiple social arenas and social worlds that in turn impacts those bodies, in a continuous feedback loop with even wider implications.

Moreover, my approach to TBI complicates the very idea of human sickness or impairment as only being the concern of a sick, impaired, or damaged body. Only one brain is injured in a single head injury, but other bodies come to be affected in the years that follow. TBI is taken up, redefined, and moves throughout society, becoming

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entangled in political and social activities, movements, and bodies. Identifying these entanglements was the intent of Scheper-Hughes and Lock’s “Prolegomenon” (1987), around which I structured my fieldwork, and they explicitly appeared throughout the preceding chapters of this dissertation. Every bodily and health condition has individual, social, and political implications—and likely many more. TBI, as shown in the preceding chapters, requires this perspective, as singling out any one aspect for a stand-alone study would miss its important intersections and entanglements with the others.

The Social Life of TBI is thus a tale of how the biological and the phenomenological do not obey the classic Cartesian split between subject and object—or in this case between brain and experience. Every survivor’s TBI becomes inexplicable without the details of the survivors’ lives, always also including their social lives. Frank claims that he never would have been able to retake custody or care for the younger of his two sons without his mother helping him with the “little things” of his daily life. Faye’s isolation from the community she helped found was instigated both by her encounter with another survivor at BIAWA and the constant harassment from her mother in law. What affects survivors that is outside of their own injuries always affects what they define as their TBIs. The two exist and make up each other in a constant feedback loop that renders them inextricably entangled.

Others are involved at every step in the unfolding of that feedback loop. All my survivor-informants, as evident in their narratives, their daily lives, and their interactions with wider organizations, depend on others. Every one of them, from those who have been able to lead the most traditionally “successful” lives, such as Sergio and Terry, to those who lead the most precarious, such as Janice and June, lead lives that are in large

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part determined by certain other people upon whom they interact daily. These significant others play formative parts in survivors’ narrative particularity and complex embodiment, both in their presence and their absence. They largely determine the level of precarity survivors face and the supports to which they turn to ameliorate it. In some cases, such as

Thomas’s and Eric’s mothers and Sarah’s and Olivia’s husbands, those others themselves have had their lives forever altered by TBI and deal with its effects on their own lives on a daily basis. They themselves face a kind of precarity with which their own significant others help them. The effects of TBI, once it is understood as multiple, can be found on many lives and in many stories.

Likewise, the Social Life of TBI challenges the orthodox Disability Studies duality between (biological) impairment and (social) disability. TBI is not a social process by which society denies access to certain spaces and activities to those with distinct kinds of bodies and minds (cf. Shakespeare 2014). Nor is it one or even a set of possible bodily conditions that depart from some socially ascribed bodily norm and are thereby constructed as impairments (cf. Patterson and Hughes 1999). Rather, TBI is found in the embodied constitutions and performed constructions of survivors and those around them that Siebers (2008) refer to as “complex embodiment.” When understood within that framework, buttressed by even newer works in the discipline, the disability of

TBI is both created and constructed in social interactions. The acronym can thus stand in for a disability with a multiplicity of meanings that themselves are amorphous, ephemeral, and unstable, shifting from one social context to another.

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What to Do with It

I began this dissertation with a simplistic and singular description of TBI. In part, this reflects how TBI begins in a reality that is not yet mired in biomedical jargon and neuroscientific expertise. Not one of my informants takes issue with the foundational association between the acronym and this foundational meaning. Even Faye, who described how her TBI “started” when she was a young girl in various abusive relationships, does not deny it. However, her story illustrates that TBI has many meanings, meanings which depend upon the context in which they are invoked.

The Social Life of TBI is meant to serve as a necessary and foundational step in the creation of more informed and useful research in public policy, public health, and engaged social science. The most basic policy implication of this study is simply that clinicians, policymakers, and others who work with and craft policy for survivors and their significant others need to refine existing law and policy to better address TBI’s multiple meanings. This implication lead me to suggest different policy responses for each of the meanings presented in this dissertation.

To begin, early clinical and social worker interventions should consider the importance that narrative and narrative transmission plays in survivors lives. There are already dozens of studies indicating how narrative and narrative analysis can be included in the treatment of complex sicknesses and injuries like TBI.50 These have surely been implemented by some clinicians and some social workers but none of my survivor- informants had experienced or benefited from this kind of therapy.

50 See for example Greenhalgh (1999), Hyden and Antelius (2010), and Lai (2010) for good appraisals of the use of narrative in situations of illness and disability. Also useful is Frank’s (2012) Dialogical Narrative Analysis. This framework is not specifically designed for medical or disability narratives, but it was formed with them in mind.

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Additionally, those who work with survivors should always attempt to identify and include survivors’ significant others in all meetings with survivors. These others may experience their own mental or bodily complications from living “with TBI.” Rehab therapists should watch for these effects and recommend treatment for them if appropriate. Some rehab psychologists do conduct joint counseling sessions, but they have been rare occurrences for both me and my survivor-informants, and I do not know of any other rehab services that engage in similar practices.

I presented several specific recommendations for the offices and NGOs that make up TBI’s body politic in Seattle in Chapter 5. However, those in the body politic with executive power collaborate, coordinate, and organize their activities more generally, as well. The current disordered jumble of policies, social organizations, and the like compete with each other for funding and stakeholders, potentially rendering all programs and policies ineffective at combatting the worst social problems related to TBI. They should consult with the various support groups in the city, medical professionals, and individual survivors and their significant others before launching any new initiatives.

They should also seek to involve representatives of each of these levels in implementing and evaluating these activities. This extends to any future homelessness task force the

Mayor or Seattle City Council organize. A very large percentage of homeless individuals in the city have likely survived their own TBIs and they must be included in any discussions of the problem as their reasons for becoming homeless, needs for housing, and interests will be significantly different from others experiencing homelessness.

The Council, BIAWA, and other arms of the BIC-a should seek to coordinate the activities of area support groups. Support Groups are not a panacea (Joseph 2002) for the

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problems faced by many survivors, but Paul’s groups did have enormous benefit for some. His groups created a venue for many of my survivor-informants to help each other to overcome or avoid precarious social situations. New ones should be instituted for those who do not and cannot participate in Paul’s groups. Other leaders should be recruited to head groups oriented around younger survivors like Thomas and Savannah; survivors with specific mobility, cognitive, emotional, or other conditions like Zoe, Frank, Aaron, and Karla; survivors that work during the day and are not able to attend Paul’s groups like Terry and Sarah and many others. Significant others should always be included in both these groups and survivors’ rehab treatments as well.

Finally, organizations should strengthen their awareness-raising efforts. Granted, organizations like the BIAWA and WA State Council already have this as one of their principal functions. Yet almost none of the survivors and their significant others I met in the city of Seattle had any idea how widespread or varied TBI actually was. They were also unaware of its numerous social effects and the programs and policies set up to address them. As a survivor myself, I did not have any real understanding of them, either—that is, until I took interest in TBI as a fruitful subject for anthropological and social scientific research. Once I began that research, I found that in order to explain to my informants what I was doing in the city, why I was interviewing them about their lives, their loved ones, or their careers, I first needed to conduct a small, one-off, awareness-raising activity with them. I had to explain my own story, the knowledge that drove my research, and what I foresaw as potential benefits of my research to them.

Ultimately, although this lack of awareness of TBI with any meaning or from any angle

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was not the focus of my research, it was clear from my first investigations that existing awareness-raising efforts were inadequate and still had far to go.

Building on and Expanding It

My fieldwork with survivors, their significant others, and TBI’s body politic left several unanswered questions that I hope to be able to explore in further research studies.

Two in particular stand out, as they speak to important current literatures in the social sciences and related disciplines.

One of the most pertinent factors to emerge from my background research on TBI was the social and identity factors such as race, class, and gender that fit within the rubric of “intersectionality.” This concept is one that first emerged in the towards the end of the

20th century in response to white feminist scholarship’s failure to assess for intersections of other identity factors in women’s experience and oppression, specifically race (e.g.,

Lorde 1980, Crenshaw, 1991).51 Later disability scholarship adopted this idea to great effect, as discussed in Chapter 4, directing scholars’ attention to the diverse outcomes of different intersections of certain factors with disability, including gender, race, sexuality, class, and the like (respectively Garland-Thomson 2011, E. Samuels 2014, Kafer 2013,

Mitchell and Snyder 2015, and others). Clinical data from emergency departments suggests that these intersections play a prominent role in who sustains significant head injuries, with significantly higher incidence rates among minority and non-white

51 Consider the discussion of the issue in Haraway (1991). She presents how certain approaches to radical and Marxist feminism of the 1980s and first years of the 1990s effectively erased all consideration of race and other identity factors through their theoretical efforts. By acknowledging the multiplicity of TBI and the inadequacy of this dissertation to address all of the significant meanings of TBI at play in the city of Seattle, I hope to have avoided a similar fate.

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Americans (Daugherty et al 2019). As discussed briefly in Chapter Two, my preliminary investigations consisted of a series of short interviews and a simplistic network analysis

(Breiger 2004). However, the brief survey I conducted as part of these investigations revealed that no single factor had significance across all my few preliminary informants’ lives other than head injury itself. In other words, narrative particularity got in the way and demanded attention before a deeper intersectional analysis could be carried out.

Throughout my fieldwork I could clearly envision the importance of this line of investigation to my research. My survivor-informants from marginalized groups did mention their identity as important to their narratives and lives “with TBI,” such as

Charles’ sexuality, Faye’s Native American identity, and Rhonda’s poverty. Yet, owing to the largely white makeup of my research participants, I was never able to gather enough data to draw any firm conclusions. I do not doubt intersectionality will prove significant in research that is more specifically targeted for it, however, addressing the question of why intersectionality did not play a more obvious role in my survivor- informants’ lives and narratives.

The answer may also lie in the rehab treatment that survivors receive, which ignores or flattens these more social elements in their lives. An ethnographic study of physiatrists and physiatry as a discipline, akin to Mattingly’s (1998) study of occupational therapy and therapists, thus seems long overdue. I intend to pursue this for my next major project, incorporating elements of The Social Life of TBI into this research, but taking a more distinctive Science Studies approach, following Mol (2002),

Dumit (2004), and others who have examined biomedical clinicians, pathologists, and others specialists as ethnographic research subjects. This project would examine the

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biomedical specialty of rehabilitation medicine from an interdisciplinary Science and

Technology Studies (STS) perspective. Physiatrists often serve as “therapy managers”

(Nichter 2002) and team leaders, organizing and directing distinct rehabilitative specialists in the care of their patients rather than treating them personally. Each of the specialist disciplines involved in medical rehabilitation—including physical and occupational therapists, speech pathologists, psychological counselors, social workers, and more—have diverse and sometimes conflicting ways of knowing patients’ sequelae and impairments, technologies for diagnosing and conducting treatment, and vocabularies for discussing what “TBI” means for their patients. The ways in which they either work together or conflict had significant impacts on my survivor-informants, some of whose narratives included episodes of when their therapists disagreed with each other. The results of this analysis will develop discussions in both rehabilitation medicine and STS about how medical knowledge and treatment can be effective when notions of “cure” and

“recovery” are never clear. As indicated in the introduction, physiatry as a specific kind of biomedical team management that is hugely distinct from other such teams would provide fruitful ground for ethnographic analysis. A critical anthropological lens could help tease out what manners of expertise, what bodies of knowledge, and what managerial skillsets rehab doctors use to organize treatment for survivors that will best prepare them for their personal and social lives outside of the medical setting.

TBI in Times of COVID-19

Ultimately, each of my survivor-informant’s stories, lives, and injuries continued to shift after I left the field. As the global COVID pandemic was first detected in the

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Seattle area and my survivor-informants felt themselves to be especially vulnerable in several ways, three in particular stand out. Their continued stories of the crisis are meaningful for both my research and for me as a survivor-researcher. Having said all that

I intend to say at this stage in this dissertation, I round out this chapter with these stories.

They both indicate the reality of the multiplicity and meanings of the TBI, highlighting some of the inadequacies of a single scholar to truly investigate a subject as varied and complex as I found it to be.

Janice continues to struggle well into 2020. She feels that she has not been listened to or taken seriously, being treated “like a criminal” by volunteers at the state

Crisis Line and other Suicide Prevention services. While writing this dissertation, I received many emails from her for the express purposes of adding to and fleshing out her narrative. They detail the many individuals who have tried to step in when she gets especially distressed and is unable to feed or care for herself appropriately. Her participation in my research, she told me, was one of the very few times that she felt

“listened to.” She only participates in the university students’ monthly online support group, at which she frequently complains of others not listening to her tales about her difficulties and her fears for her immediate well-being. She no longer has as many options for socialization and thus has been relying on the crisis line and other formal avenues for support that she would normally get from other less formal sources, including neighbors, acquaintances, and even friends who work in the medical profession.

Terry continues to coach at his university, communicating with his student athletes over the phone and over email. His girlfriend, a clinician whose life has been the most impacted by the novel virus, recently became his wife. Terry’s story continues to be

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uniquely optimistic among my survivor-informants. He credits the many people who helped him over the years since his injury with this, though their purpose in his narrative is largely to stand back and let him follow his own independent initiative. I do not want to take away from this story, but when I read it alongside those of my other survivor- informants, these significant others do more than just passively allow his story; in many cases they helped constitute it. Terry still had to do the work that got him to where he is now, but he never did so alone. As his now-wife said when I interviewed her, she still has to help Terry with small tasks around the house. Through these small interventions with what Frank spoke of as “little things,” he continues his successful career free from such minor distractions as wondering if he turned the stove off.

Faye ultimately came back to the community she founded with Paul many years earlier. Together, they started up a newsletter for survivors during the pandemic that brings stories, games, puzzles, and cooking tips to group members’ email inboxes once a week. It also has a small advice column that Faye writes. In the inaugural issue of this newsletter, she wrote a small advice column titled “After Brain Injury: Telling Your

Story”:

How My Injury Happened Story 1-1 Your brain injury happened as a result of an event of a situation. To begin telling your story choose a prompt: I remember when my injury happened… As I was told later, my injury happened when… One day, when I least expected…

On the next page of the newsletter, Fae began her own story with “One day, when I least expected I fell down my basement stairs.” Through this introduction, she tethered her own life and story to event of her head injury, exactly mirroring the process I laid out in

Chapter 3.

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Faye and her husband moved out of the house that they had shared with his mother and niece a year after I left the field. This fundamentally altered their complex embodiment of TBI, as Frida no longer acts as one of Faye’s significant others. Her husband still works long hours to support them, while she does her best to obey “social distance” guidelines and stay in their small Seattle apartment with no one but her support dog to keep her company. But Faye says that she is doing better than she has ever done since becoming a survivor. She happily devotes her time to the community that she and

Paul lead, as she arranges their online meetings for each group, reminds group participants before every meeting, and organizes more informal virtual meetups for most other days of the week. She proudly boasts that the groups now have more reach and are growing faster than ever before. Today Faye counts her story as a “success” where only a few years before, both because of the events of “The Split” and because of the constant harassment she received at home, she had been unwilling to leave her house.

Conclusion

TBI in the end reveals itself as very “good to think with” (Geertz 1973). It both challenges and verifies common academic assumptions about the brain, human sociality, and the interrelatedness of the two. As a survivor myself, I have often been challenged, disbelieved, and outright laughed at by academics when I talk about what “my TBI” means in my own life and functioning. This has been especially true during the isolation and uncertainty of the pandemic. The unspoken assumption in these confrontations has seemed to be that I am asserting my own injury as universal and my own theoretical position as absolutely true, not allowing for others’ experiences or interpretations. As I

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was trained in critical ethnographic theory and method, I could see the merit in these arguments. But I cannot accept their objections to my use of autoethnography without denying my own experience as scholar and survivor, a story which I have always been careful to analyze as nothing more—nor less—than my own TBI. As more and more contemporary anthropologists are accepting, there is value in an autoethnographic tale

(Kasnitz 2020) or ethnography of one (Biehl 2004). In my own case, it resulted in the critical thought and methodology that built into this dissertation and that allowed me to begin to see TBI as multiple. Only then could I fully understand the disparate and often conflicting data arising from my three phases of fieldwork. Additionally, only then could

I see that the process that I was seeing in my own informants’ stories, words, and lives was a reflection of what had and was continuing to happen in my own.

In the end, my story and all my informants stories and lives, particular and contextually dependent though they may be, are similar. They are not truly distinct from other persons’ stories, either. As Jodie Foster’s character in Robert Zemeckis’ Contact

(1997) says at the end of the film: “I had an experience that showed me that we are not— that none of us is alone.” In researching The Social Life of TBI, I not just learned of but lived the reality that I and all other TBI survivors—like everyone else—are not ever alone, for both good and ill. Others not only appear in our stories and our lives but make them—and us—up. They are, as I liked to tell my informants once I had begun to analyze my first few narrative interviews in the field, the “difference that makes the difference” in our respective and particular lives. They accommodate our needs or exacerbate our struggles; they facilitate, diminish, aggrandize, and ultimately constitute our disabilities; they are central stakeholders in the policies that are implemented for and because of us;

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they are ineluctable parts of our community. Through all of our interactions, physical brain damage and sociality comingle and entwine in a narratively particular, complexly embodied, precarious, and communal reality, blurring the distinction between individual, social, and political bodies, and bringing a new and multiple social object, TBI, to life.

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