5    LIVING PROXIES: THE STANDARDIZED PATIENT PROGRAM

To train medical professionals in proper care, the standardized patient program uses actors to simulate illness and disability. Once given an assignment, the “patients” are interviewed and examined by medical trainees seeking to be nurses or physicians, who try to diagnose the performers. The entire process is monitored, and the trainees are evaluated on their methods, the accuracy of their diagnoses, and the compassion that they demonstrate during their interactions with the standardized patients (SPs).

In a radio profile of an SP based in Los Angeles, the host captures the program through an analogy: “Like the nude model in art class, or the customer at the beauty school salon, [the SP] is a human learning tool.”1 Similarly, Janelle Taylor quotes a typical speaker at an SP conference: ‘‘this is a technology from my perspective. Whether you’re using a person, or a computer program or a mannequin, it’s all part of the continuum of simulation.’’2 Living human bodies, behaviors, and biographies complicate these analogies between life models, mannequins, tools, and technologies. This is because—to dispute the previous statements—people will always resist attempts to make them into simple tools and technologies. SPs offer their bodies as stand-ins for a world of potential bodies, performing their humanity while simultaneously acting as if they are sick or disabled. But their bodies linger, and the standardized patient program must creatively manage the overlapping humanities of those who act as proxies and the people for whom they stand in.

The standardized patient program is part of a shift in medical training toward the clinical performance of care and the standardization of the “emotional labor” of medical professionals.3 Today, every physician in the United States and Canada, whether trained nationally or internationally, must complete an exam called an Objective Structured Clinical Examination (OSCE) based on SP interactions.4 Medical licensing and the possibility of standardized medical care now hinge on a bureaucratically administered system for training actors to embody scripted roles, simulate disease, and perform as disabled.

Proxies are relational artifacts, meant to bind institutions and disciplines to shared reference points. They animate the work of culture that uses things—or people—to think other things. We’ve seen how proxies, from the most basic pieces of metal in the metric system to the stuff of a male-dominated image lab, are porous, leaky, and unstable. All of these issues threaten the long-term viability of proxies and, with them, the knowledge infrastructures of these institutions. The history of proxies is as much that of their selection as of their maintenance, upkeep, and repair. The history of the standardized patient program, accordingly, is a particularly thorny one.

This story of proxification traces the way that human bodies—in all their leakiness and porousness—have been trained by a medical establishment to act as relational instruments. SPs are meant to stand in for the experience of illness and disability in order to encode a form of medical care that lives up to the standards and expectations of the profession. The program began as a way of imagining a better relationship between physician and patient, and it continues as a way of simulating those relationships in the reproduction of medical and caregiving norms. By simulating doctor-patient interactions, the standardized patient program is meant to train people in the embodiment of illness in order to compel physicians to embody proper doctoring. This relational dynamic, for which there could be no computerized or written substitute, makes human proxies invaluable in the standardization of care.

This chapter has a number of goals. First, it conveys a brief history of the standardized patient program as it took root in the United States and Canada—its transition, over a few decades, from a curiosity into an entrenched aspect of medical education and accreditation. Second, it paints the standardized patient program as a bureaucracy that relies on human beings who can act as faithful, consistent, and trustworthy proxies for the pain and suffering of others. Third, and finally, it shows how all the cultural practices surrounding proxies, including the use of fixed points, the ritualized performance of embodied gestures, the vesting of particular materials as stand-ins, and the inescapable regimes of data hygiene, apply when the target of standardization shifts to human bodies and human interactions. In addition, this chapter charts a novel process of measuring, quantifying, and standardizing affect and care in the late twentieth century. Such efforts take place within a larger context of the quantification of emotion, affect, and care, as well as the development of new, intricate relationships between measurements and feelings.5

A NEW STANDARD

Between the 1970s and 2000s, medical educators in Canada, the United States, and Great Britain adopted a greater performance-based framework in training and accrediting physicians, and the standardized patient program is just one example of this process. This period was also characterized by the influence of medical educators trained in psychometrics, which has led to more emphasis on “standardization, reliability, and validity in assessment.”6 This shift in emphasis was also compelled by the rise of a patient safety movement, an increase in malpractice lawsuits filed against American physicians, a perceived increase in medical errors, and a decrease in patient satisfaction with care.7 A shift to a performance-based framework demanded a new standard—and corresponding simulations—that could be used to evaluate any physician who wanted to work in the United States; today, OSCE testing with SPs is currently centralized in five US cities, and exams are given every workday.8 This new licensing requirement emerged from a belief that it was financially and ethically necessary to supervise the diagnostic skills and affective care of physicians.

The use of SPs dates to 1963, when a physician, Howard Barrows, and a medical education researcher, Stephen Abrahamson, at the University of Southern California (USC)—the same campus where, exactly a decade later, the Lena image would first be digitized—were looking for a way to train and compare third-year medical students’ interactions with patients. Barrows and Abrahamson were working in a context where little attention was paid to the training of “bedside manner” and patient compassion. A contemporary test of bedside manner was scrapped by the National Board of Medical Examiners in 1964, when it was revealed that the evaluation results were as random as chance.9 Early adopters of Barrows’s standardized patient program, who used it as a supplement to their gross anatomy classes, claimed to view the SPs as “bridging the gap between cadaver anatomy and the anatomy of the living human being.”10

Barrows was a young physician in USC’s Department of Neurology, and his collaborator, Abrahamson, was the school’s director of the Division of Research in Medical Education. They published their first paper on the use of SPs in 1964 under the title “The Programmed Patient: A Technique for Appraising Student Performance in Clinical Neurology.”11 Over the years, the techniques that Barrows and Abrahamson developed evolved from using the term “programmed patients” to “simulated patients” to, finally, “standardized patients.”12 The change in name does not indicate a drastic change in either methodology or the demands placed on the actors involved. However, the choice of which of these words to use—“programmed,” “simulated,” or “standardized”—says something important about proxies: they are programmed objects meant to simulate an event for the purpose of standardization. By ultimately calling the proxies SPs, however, the process is actually reversed: they are standardized instruments meant to program medical students in proper behavior through simulation.13 The Canadian psychometrician Geoffrey Norman, who coined the term “standardized patient,” did so for this exact reason: he wanted a term that captured the “technique’s strongest features, the fact that the patient challenge to each student remains the same.”14

THE SCENARIO

Standardized patient programs use a preplanned set of scenarios, within which SPs embody fictional patients with symptoms, past behaviors, and a set of questions to ask their trainee physician. There are several variations on what a trainee may be asked to do, but in general, they will enter the scenario as if it were a normal clinical exam. The trainee may be asked to take the patient’s history, perform a physical exam, and try to form a working diagnosis. Throughout the scenario, they are meant to gather information while expressing proper compassion toward the SP. Study guides for physician trainees universally emphasize the importance of being polite, gentle, and presenting a neat and clean appearance. Almost every guide begins with a reminder to trainees not to forget to wash their hands.

Trainee physicians encounter SPs in a circumscribed scenario: they enter a room and are either alone with the SP, watched on a closed-circuit television (CCTV) system, or perform in front of colleagues and teachers. They encounter the bodies of the SPs via their sight, hearing, and touch and all of these senses help build a network of inferences, analogies, experiences, and likenesses. In The Birth of the Clinic, Michel Foucault describes the logic of this kind of encounter as a product of the eighteenth-century emergence of a “clinical” or “medical gaze,” and with it a shift to the primacy of the physician as the locus of knowledge about disease. The clinical gaze centers the physician’s understanding of symptoms as a “combinative study of elements,” by which a series of symptoms would add up to a diagnosis of a distinct disease.15 A principle of analogy (the conditional as if of a patient’s history) displaced the patient’s own perspective and recodes the body as a constellation of information in a series of patterns. As Hsuan Hsu and Martha Lincoln describe: “Facilitated by the medical technologies that frame and focus the physicians’ optical grasp of the patient, the medical gaze abstracts the suffering person from her sociological context and reframes her as a ‘case’ or a ‘condition.’”16 The standardized patient program could not operate without the deep, institutional, and infrastructural normalization of the clinical gaze. As a simulation meant to train the physician in apprehending a probable diagnosis—whether or not the disease actually exists in the person—it operates on the logic of a case study, where patient descriptions situate their bodies on a graph of similarity to other bodies.17

To generate the SP scenario, medical educators first develop a profile of a case study using a template and then distribute patient scripts to the actors. For the medical educator who prepares it, the patient template takes the form of a lengthy document that can cover everything from demographic descriptors of the SP, like age, gender, race, sexuality, and physical description, to a detailed account of the SP’s complaint, wardrobe, background, and affect.18 For the patient, the details of the script can vary. The example shown in figure 5.1 is an excerpt from the “Patient Behavior” section of an SP script template. The section provides the range of dimensions for the patient’s emotional state and how that state should present in body language and facial expression. The template is meant to program, as much as possible, the basic contours of the interaction, such that the responses of the physician-in-training can be judged both qualitatively and quantitatively against other trainees.

Figure 5.1

An excerpt from the “Patient Behavior” section of an SP script template. Excerpted from a training document from the University of Texas Medical Branch’s resources for medical educators.

In turn, a template produces a script for SPs to follow. The “Back Pain Script” shown in figure 5.2 includes basic demographic details with added identifying information, including education, employment background, and possible stressors like feeling overworked. The “Scenario” and “Patient Profile” are written in the second person, “you.” The Profile describes how the performance should unfold from the perspective of the performer. SPs are given a list of questions that they should expect to hear and the answers they should give to each. These range from questions about specific ailments and pains (“Q: Where is the pain? A: Lower back, especially left side and left leg”) to questions about the patient’s history, background, and typical behavior (“Q: Alcohol? A: Socially, one or two glasses of wine a week”).19 SPs are coached in how to embody these scripts and how to express their symptoms through their bodily comportment and reactions to physical examination. By memorizing, internalizing, embodying, and in turn exhibiting the details of their personae, SPs leverage their relationship to actual patients and create continuity between textbook knowledge, simulations, testing environments, and actual doctoring.

Figure 5.2

The beginning of an SP brief for a “back pain” patient, excerpted from a training document from the Baylor College of Medicine.

The scenario often begins with the trainee performing a standard history-taking. When they do so, the SP leverages an analogic relationship with actual illness through the performance of a life marked by experiences, routines, and behaviors that can be called up to corroborate their symptoms and to form a complete picture of a person in need of medical care. This performance of experience is meant to render their bodies as readable through a theater of transparency. In the words of Rachel Hall, the theater of transparency is a “mode in which the citizen’s episodic affirmations of life and futurity are rehearsed, compelled, enacted, repeated, and confirmed.”20 The only difference here is that the citizens in question are stand-ins for the lives and futures of others.

Together, the actor, template, and script create a controllable, relatively repeatable scenario against which medical students can be evaluated. The same scenario can be repeated and used to test the variability in student knowledge, empathy, and skill. A final piece of paperwork is used to record judgments of the physicians-in-training: the Master Interviewing Rating Scale (MIRS) is one tool used to score up to twenty-seven features of the interaction, beginning with the trainee’s introduction and progressing through such factors as how the trainee elicits information about the impact of the illness on the patient’s family, the trainee’s demonstrated empathy, and their acknowledgment of the patient’s cues (figure 5.3).21

Figure 5.3

Excerpt from the MIRS showing how to score a trainee on their demonstration of empathy. The scores run from 5 (highest) to 1 (lowest), and there are descriptions of how to score for each number on the scale.

A standard uses the stuff of the local and the specific to code and compel behaviors in the future. The standardized patient program takes this logic to its extreme, using the bodies, voices, and physical responses of actors, the predictable and scriptable formulas of templates, and the ideology of psychometric testing to create an idealized version of how medical care ought to be delivered. The purpose of improving these interactions is not only to improve the bedside manner of would-be physicians, but also to improve the overall care of patients. Activist and patient movements to gain recognition for suffering, patient safety, and equity in care have all demonstrated that the emotional and affective tenor of medical care improves patient outcomes and a patient’s willingness to access care in the future.

SIGNALING THE BODY IN PAIN

The standardization work involved in the SP program relies on a belief that we can communicate our pain or suffering through language and representation—that there are media for expressing and recognizing suffering. This is evident in the ways that the standardized patient program relies on semistructured encounters where patients share their symptoms and histories. But if the communication of pain were easy, then the standardized patient program wouldn’t exist. In reality, the expression of one’s pain and the recognition of that pain by others are both complex, interpersonal events that can be easily overwhelmed by social expectations, prejudices, and the noise of mediation.

In her groundbreaking work The Body in Pain, Elaine Scarry examines the difficulty of expressing pain and the obstacles that exist to finding genuine sympathy for another person’s suffering. To be in pain, Scarry argues, is to have certainty, but to hear of another person’s pain is to have doubt. This gap between certainty and doubt is further obstructed by the fact that pain often also inhibits expression, either because pain itself is debilitating or because it “resists verbal objectification.”22 Not only is another person’s pain fundamentally inaccessible as a physical phenomenon, the ways that we normally bridge intersubjective gaps are not readily available in the case of pain. Language and other forms of symbolic representation do not convey either the intensity of pain or its felt immanence. Finally, Scarry argues that because pain is often ineffable and there are limited outlets for its representation, there are few ways of achieving political recognition for it.23 The result is a circular reaffirmation of pain’s loneliness—the person in pain is certain of their experience but lacks any recourse for gaining compassion and recognition.

For Scarry, the only path to validating another person’s suffering is for that experience to be objectified (i.e., turned into a common object of analysis) and lifted into a world of shared symbols and representations in a manner that retains a definite reference to the human body. Pain needs media. Once materialized and tethered to a shared understanding of embodied experience—that is, mediated—pain can be acknowledged, validated, and attended to.24 Any attempt to alleviate or remedy pain faces a series of gargantuan tasks: bridging the intersubjective gap between feeling pain and having that feeling understood, having pain validated through symbolic representation, and achieving political recognition that can provide the grounds for ongoing and future recognition and remedy. The capacity for someone to clear these hurdles is also encumbered by the uneven distribution of recognizability. Gendered, raced, and stigmatized forms of injury, disability, and pain face greater obstacles to recognition and acceptance and demonstrate that the gains in intersubjective understanding are always contingent.

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Medical systems have many tools for trying to bridge the intersubjective gap between patient and physician. There are tools for quantifying pain, for narrating or describing it, and for gauging an appropriate clinical treatment for it. These tools vary by discipline, region, and practitioner, but each seeks to do what Scarry describes and to mediate between a person who is suffering and a person who may be able to alleviate their pain. Widely used instruments for describing and quantifying the subjective experience of pain ask patients to give a rating to their pain (“on a scale of 1 to 10”) or to rely on a standardized vocabulary to characterize pain. The widely used McGill Pain Questionnaire dates from the 1970s, contemporaneous with the standardized patient program, and sorts descriptions of pain into three categories (sensory, affective, and evaluative) and rates each sensation on a scale of intensity. Ronald Melzack, who originally developed the questionnaire, provided it as a means for transforming the experience of pain into information that “can be treated statistically.”25 To put this in the terms that Scarry sets out, instruments like the McGill Pain Questionnaire can transmute the ambiguity of another’s pain into a statistical regularity, placing the subjective experience of a stranger on a grid of patterned normativity.

Scarry’s approach is a humanistic and philosophical one. But sharing one’s pain and accepting another’s pain are processes embedded in social and historical milieus. They are processes marked not only by an intersubjective gap, but by institutions built on norms and standards that accord different bodies more or less legitimacy in their expression of pain. Even with tools to represent and measure pain, there is inequity in the recognition of suffering.26

In 2016, researchers at the University of Virginia published a study in the Proceedings of the National Academy of Sciences entitled “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between Blacks and Whites.” The authors show that among white-identified laypersons, medical students, and medical residents, there were widespread false beliefs about the experience of pain among racially coded Black patients and white ones. Among the laypersons, 73 percent ascribed to at least one false belief about the biological difference between Black and white people, including that “Blacks age more slowly than whites,” “Black people’s blood coagulates more quickly than whites’,” and “Blacks’ skin is thicker than whites’.”27 Among those with some medical training, 50 percent of their participants still ascribed to at least one false view. And among those who were medically trained, false beliefs about pain reception correlated with biases in their treatment recommendations.

In other words, among a statistically significant segment of the sample, medical students and residents (1) had false views about biological differences among Black and white people, (2) ascribed “fantastical” attributes to Black patients, and (3) were less likely to follow an accurate treatment recommendation for Black people suffering pain.28 As the authors of the study note, their work takes place in an American medical system that has inherited reified racial differences that propagate both a false human racial taxonomy and a false view of Black bodies as being more resilient: “beliefs about biological differences between Blacks and whites—beliefs dating back to slavery—are associated with the perception that Black people feel less pain than white people, and also with inadequate treatment recommendations for Black patients’ pain.”29

Throughout the history of the United States, a belief in the racial peculiarities of white and Black people has been used as a justification for slavery, torture, and medical experimentation premised on a cultural view of the Black body as resilient and physically predisposed to withstand pain. Activist and social justice organizations like the Black Lives Matter movement have had to work to gain recognition for the particular suffering of Black bodies (hence the erasure of that specific pain expressed in the antislogan “All lives matter”) within a system that forecloses the possibility of such recognition. Within white supremacist systems, the denial of pain suffered by people of color is a strategy to actively delegitimate the political demand to reckon with the history of colonial and settler exploitation and ongoing forms of acute structural violence, and a refusal that some kind of reparations ought to be paid.30 As the University of Virginia study makes clear, this history has a subtler cost: the ongoing misrecognition of felt pain within medical establishments. A person seen as Black is less likely to receive necessary medical care or relief if their pain and suffering are not recognized.

One of the mechanisms of white supremacy is the way that it has paradoxically secured a position of dominance within institutions through the pretext of nonwhite resilience. The history of scientific and medical research in the Global North is marked by dehumanizing and eugenicist projects and devious experiments on the bodies of Indigenous people and people of color. From the moment of settler dispossession up through the twentieth century, as Harriet Washington documents in Medical Apartheid, the history of the United States is marked by medical experimentation on the bodies of minorities. Studies like the Tuskegee experiments—which allowed syphilis to develop untreated in the bodies of Black men, without their knowledge or consent, all in the name of research—are outrageous violations of personal sovereignty. But as Washington’s history makes clear, the episodic nature of white outrage at such events masks the longstanding continuity that has entrenched medicine as a white-serving institution and bred a well-earned distrust of the profession among nonwhite patients.31

We must situate the widespread denial of Black pain among medical professionals as a continuation of this history, as a manifestation of its banality. We must also not ignore the fact that Black pain is not monolithic or itself a natural category of suffering. So-called Black pain is an intersectional and relational concept and a narrative of experience within institutions built on white supremacist precepts: women, mothers, the economically oppressed, Indigenous, queer, disabled, and gender nonconforming individuals are much more likely to be denied necessary medical care or to suffer nonconsensual medical interventions.32 The denial of Black pain is a white supremacist excuse for the objectification of human bodies in medicine and science, and it erases human vulnerability to structural harm. Angelique Davis and Rose Ernst refer to this process as “racial gaslighting,” by which they mean the “political, social, economic, and cultural process that perpetuates and normalizes a white supremacist reality through pathologizing those who resist.”33

The denial of Black pain is part and parcel of a white supremacist society in which marked minorities are more likely to suffer harm, all while the harming entity simultaneously claims that the minority is less likely to feel pain. The most widely held false belief among the medical students studied by the researchers at the University of Virginia was the belief that Black bodies have thicker skin. It is a literal manifestation of the fantasy that Black bodies are naturally built to withstand structural and literal abuse. The fantastical capacity ascribed to Black bodies to withstand pain is dehumanizing twice over: they categorize a racialized body as superhuman (abnormal) while materially narrowing the options for remedying the actual harm that is suffered.

The standardized patient program was developed in the 1960s in a moment when physician attention to the affective dimensions of their work was an afterthought. It became an entrenched part of medical training as these dimensions, as well as their standardization, gained recognition as both socially and medically efficacious. But the program continues to operate within an institution that propagates widespread disparities in care and narratives about racialized bodies that deny their subjective experience of pain. As Scarry argues, any person seeking to communicate their pain faces a double bind—being certain of their own pain while responding to the doubt and skepticism of their audience. Overcoming this bind within the medical establishment is a process that relies on the standards of medical history-taking, symptom-reporting, and a duty of care. But the standard is not enforced equally. The credibility of another’s pain is established through medical rituals formed within institutions built on discriminatory practices. The playacting of SPs needs to be appreciated within the context of racialized violence and the failure to accept some bodies in pain as legitimate.

NOT NOT SICK: THE SUSPENSION OF DISBELIEF IN STANDARDIZED PATIENT SCENARIOS

In Barrows and Abrahamson’s first published description of the standardized patient program, they write:

The concept of the “programmed patient” involves the simulation of disease by a normal person who is trained to assume and present, on examination, the history and neurological findings of an actual patient in the manner of an actual patient. This person is then used as the subject for clinical testing of student performance.34

What we see in this distillation of the standardized patient program is the way that normalcy is an imagined canvas for abnormality. Barrows and Abrahamson make a number of assertions about the feasibility of standardizing human performances and creating an emotionally charged exchange. The first is the notion that a person could be “programmed.” The second is the suspension of disbelief that this work requires: suspension on the part of the actor and the physician-in-training. Barrows and Abrahamson address this suspension head on in their original description: “The student is informed that this is a simulation but that he is expected to treat the subject as he would a patient.”35 Encoded in the basic instructions is a productive fictionalism, in which all parties act as if it were the real thing in order to encode the promise of a better encounter in the future.

Finally, the simple declaration that the patient would be a normal person, trained to assume and present the characteristics of an actual patient, delineates a presupposition that there are “normal” and “diseased” people and that the former can learn to be like the latter with enough coaching. Erving Goffman describes “we and those who do not depart negatively from the particular expectations at issue” as “normals.”36 The standardized patient program appears to uphold such a distinction and to take Goffman’s typology even one step further. Whereas “normals” are those people who can pass without stigma, the standardized patient program uses this apparent normalcy as the basis for creating a dependable and reproducible appearance of illness. Through the process of producing a new standard of care, the program reinscribes a binary division of human bodies as either normal (disease and disability free) or abnormal. In the attempt to codify an understanding of bodily difference, the program begins with a normate template of human well-being beyond which all maladies can be codified and pathologized. The normate, following Rosemary Garland Thomson, designates the “veiled subject position of cultural self, the figure outlined by the array of deviant others whose marked bodies shore up the normate’s boundaries.”37

Many standardized patient programs seek out actors whose bodies are not clearly marked by actual impairment or disability. In doing so, these putatively normate bodies become doubly significant: the healthy actor is always already capable of embodying the signifiers of illness through trained simulation (i.e., they are people), and they are free of the overdetermining noise of illness and disease (i.e., they are “normal”). Their power resides in a suspension of disbelief in a person’s ability to shift to the simulation of impairment, illness, and disability without permanently embodying that social position—to live as the embodiment of the as if.

To put it in the terms of proxies and their maintenance, SPs can signify clean, hygienic versions of test data that can be used for the measurement of physician performance and that are preferred over the uncleansed and unpredictable embodiments of people living with actual illness, socially coded as disabled, or both. To understand these interactions and the use of actors in the simulation of illness and disability, we have to understand how medical institutions reinforce a system of compulsory and prototypical able-bodiedness and able-mindedness that relies on a medical and social understanding of disability.38 To quote Lennard Davis, “the very concept of normalcy by which most people (by definition) shape their existence is in fact tied inexorably to the concept of disability, or rather, the concept of disability is a function of a concept of normalcy. Normalcy and disability are part of the same system.”39

Disablement and impairment are relational experiences, contingent categories, and cultural artifacts that emerge from the interaction of bodies, identities, discourses, built environments, and the politics of medicine and state control.40 Disability activists and scholars have often fought the medicalized descriptions of people’s bodies that categorize, essentialize, and individualize them according to diagnostic criteria. The medical model of disability, it is argued, has historically been a tool of oppression and exclusion that is tied to forced institutionalization and a generalized view of “disability” as a medical problem and personal tragedy.41 As a remedy to the medical model, many have advocated for a social model of disability proclaiming that disability ought not to be treated as an individualized ailment, but rather as a shared, social process of disabling. To put it simply, the medical model insists that disability resides in a person’s body while the social model insists that the problem lies in society; the social model “is a deliberate attempt to shift attention away from the functional limitations of individuals with impairments onto the problems caused by disabling environments, barriers, and cultures.”42 The social model draws a distinction between “impairment” and “disability,” wherein many people might have a range of impairments, but only some people will be categorized as “disabled.” Hence, for most people in the Global North, moderate nearsightedness is not disabling because corrective lenses are widely available and there is little stigma about wearing glasses or contact lenses. On the other hand, many people with paraplegia will experience the world as disabling given the lack of accessible buildings and transit systems, widespread discrimination, and threadbare social welfare programs. The social model treats disablement as something that happens when society has failed to adapt to an impairment.

Although the social model has found purchase with many activists, academics, civil society, and some medical institutions, some argue that its distinction between impairment and disability is itself too rigid. By distinguishing between impairment as a description and disability as a social disadvantage, critics argue that the social model risks its own essentialization of impairment as an objective phenomenon that rises to the level of the social only when it becomes a disability.43 Such a distinction risks arbitrary exclusions of people—for instance, those with chronic illness or chronic pain—for whom the label of “disability” might offer political potential and collective belonging.

As an alternative, Alison Kafer offers a political-relational model of disability as one that builds on social and minority understandings of disability. A political-relational model is attuned to the “failures and omissions of the built environment” that create more frictions for some embodied dispositions than for others.44 But the political-relational model goes further—it’s an attempt to pluralize the meanings and experiences of bodily instability, to unsettle the certainties of the medical and social models, and to refuse the depoliticization of disability. Kafer insists that disability must be understood as relational, meaning that a disability is experienced not in isolation, but rather through relationships: this includes the constitutive relationships that one has with the meaning of ability/disability, with family and friends, and with strangers.45 Together, these relationships ripple out, and the social effects of stigma, discrimination, love, support, and compassion can fortify, twist, attenuate, and rend our shared networks of experience.

The standardized patient program is a technology built into the education and accreditation system of the medical profession and—more important—it is a crucial piece of the emotional infrastructure of medical work. It is also founded on the idea that illness, pain, and suffering enter the medical establishment through a relational encounter. The encounter is the meeting place, threshold, and exchange point between the world out there, as the messy world of personal, idiosyncratic experience, and the one in here, where knowledge is systematically organized. The SP encounter takes the form of an improvised though structured dialogue, through which one party comes to appreciate the nature of another’s embodied experience and places it within a system of knowledge that recodes experience as diagnostic data. The entire encounter is held up by another form of relationality, the suspension of disbelief, which must be upheld by both parties, or else the whole interaction would capsize.

If another’s pain is fundamentally unknowable then all empathy relies on some dimension of shared suspension: I trust you to relay your pain; and you trust me to believe you. The standardized patient program, then, is a form of relational training—a way of building up a chain of social relationships that might bring another person relief from suffering. It’s a way to practice diagnosing by sifting through the information provided by the “patient,” as well as a way to practice a willingness to believe, to trust another’s experience as a valid report of their pain and suffering. While we might focus on the embodied experience of the actors in these scenarios, a political-relational approach to impairment and disability should equally attune us to the ways that the SP scenario is meant to entrain the disposition of a physician to the culturally unexpected experience of real compassion.

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In The Empathy Exams, Leslie Jamison describes the kinds of maintenance and hygiene that she and her fellow SPs undertake between simulated examinations:

Between encounters, we are given water, fruit, granola bars, and an endless supply of mints. We aren’t supposed to exhaust the students with our bad breath and growling stomachs, the side effects of our actual bodies.46

SPs use these practices of upkeep to conceal and mask the parts of their bodies that would interfere with the encounter—body parts that would introduce noise into the media setting of the scene. This is a textbook way of controlling the variables in a testing scenario—of highlighting only the parts of the body and the emotional exchange that are supposed to be examined. It is also another example of the manual, embodied, and routine forms of data hygiene that workers in standardization processes use to maintain their test data. Instead of an ether-alcohol solution used to wash a kilogram or the folding/tearing of an illicit image examined in preceding chapters, the “data set” for an SP is an organic, living person. And while Jamison notes that she and her fellow participants are given water, food, and mints, the responsibility of upkeep falls to each actor to maintain their body as a canvas for testing the variability of physician performance.

Louise Aronson, a physician and educator, says that she has “often heard from students that the greatest challenge of standardized patient exercises was the suspension of disbelief. The most vociferous complained that circumstances so contrived couldn’t possibly test them on actual practice skills.”47 As Aronson concludes, however, immersion in the scenario is possible for her—as an experienced physician—through the practiced execution of a kind of labor that she is accustomed to performing:

As my own encounter began, I could see their point. Yet soon thereafter, with patient and student fully immersed in their roles, I couldn’t help but behave—and respond—much as I would in so-called real life. There was artifice but also familiar work to be done.48

All attempts to build a standard around a proxy require a suspension of disbelief. Proxies are contrived—arbitrary, but precise—samples of the world that are provisionally treated as good enough stand-ins. They are makeshift, but they are necessary just the same. And so we suspend our incredulity to get our work done. With enough repetition, this suspension can take on the appearance of naturalness, or even objectivity. As Aronson says, the familiarity of a routine patient interview covers for the artifice of the proxy patients. The SP scenario needs to hold together just long enough for the necessary data to be gathered: the trainee determines an actor’s history, and the medical educators evaluate the trainee’s performance.

As consumers of media, we are accustomed to the generic conventions that establish suspensions of disbelief: the markers, frames, contexts, and affective investments that we bring to cultural texts to let ourselves be sutured into their artifice. In theatrical settings, the capacity to suspend disbelief is an ideal that must be upheld by both performers and audiences. In An Actor Prepares, Constantin Stanislavski quotes his director as describing “the test” of a successful performance as the “art of living a part.”49 This oft-repeated slogan of so-called method acting refers to the ways that an actor embodies an experience as theatrical reality. Within a scene, the emotional experience is real even if the scenario itself is contrived. It is possible, however, to see this technique of living a part, of suspending disbelief, as a theatrical trick to achieving and expressing verisimilitude, and to view it as a larger cultural technique for producing and verifying knowledge. It is also possible to see it as constitutive of the very practice of being a doctor.

In a popular manual for physicians, titled Proper Doctoring, published in 1984, near the end of his career, the British cardiologist David Mendel writes, “Although a sound knowledge of the facts is essential, a good doctor differs from a bad doctor more by his attitude and craftsmanship than by his knowledge.”50 Mendel’s tract is composed of a series of doctoring precepts that he compiled throughout his career. The focus of his advocacy, however, is the “much-maligned bedside manner.”51 For Mendel, a properly honed bedside manner, and by extension a properly honed doctor, are a result of training and practice in the art of playing a doctor. Under the section “The Need for Role-Playing in Medicine,” he writes:

Doctors vary in the extent to which they act. Some ham it up. Others are to the manner born, and practice their art without artifice. Some confine their role-playing to their work; others never stop acting. Doctors range from the saintly and perceptive who do not need to play-act, through to the horrid and insensitive, who may neither realize, nor care, how beneficial a role could be.52

Mendel lays out a method, echoing Stanislavski’s, for routinely inhabiting the role of “doctor” until the role feels natural. In this, his analogies are mainly theatrical. For instance, he writes in the section on “Rehearsing your role”:

The role of doctor, like the role of Hamlet, is not one which you can leap onto the stage and perform. In order to play Hamlet, as distinct from watching him, which anyone can do, you have to examine each word, each phrase, and take it all in the context of the whole play.… So you go on stage, knowing your role, knowing what you want to achieve—the perfectly treated patient—and you have to use a lot of learned techniques to achieve that end.53

What Mendel sees in the practice of proper doctoring is not a distinction between performance and objectivity, but the weaving of the two: the necessary acceptance that one’s diagnostic is mediated through the relational encounter with a patient. The interface of the exam is always theatrical, and for both patient and doctor, its repertoire is learned through the coding of practiced gestures and speech.

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In reenactment, there is often a fear that the theatrical rendition of an event will be either too real or not real enough. In the case of the former, there is the danger that reenactors will forget that they are involved in a practice of make-believe; in the latter, there is the danger that they won’t give themselves over to the performance, that it will seem phony. Rebecca Schneider describes the friction of this relationship as a “queasy portal,” through which performers can momentarily forget their embodied time and place. In her interviews with historical reenactors, Schneider says, “The differences or the lack of differences between faux and real might not necessarily be failures or threats.”54 There is no guaranteed meaning tied to the failure to delineate reality from reenactment; there is no strict hierarchy between “real” and “pretend” to which performers aspire. Instead, Schneider says, there are moments “when some things, like reading, or even modes of critical thinking or patterns of analysis, become habit-memory, they are skills, fully learned, available to call up as research tools or artistic craft.”55 For reenactors of the US Civil War, this form of habit-memory can be a way of encoding the traumatic memory of the past through performance. These are ways of animating collective, cultural forms of remembrance that can be recalled through the scripting of gesture.

Reenactment can also be a way of warding off an unwanted reality. Schneider’s reenactors perform historical battles to reanimate a remembered moment in a controllable way. For many of her informants, performance is not (or not only) a proxy for a desired past, but a proxy for an unwanted future: by performing now, in this way, we will know how it felt then, and we will be able to prevent its recurrence. Performance as proxy, then, can act as a historical prophylactic, averting historical recurrence through an affective awareness written in gesture, costume, and real-time recreation.56 But, it is, of course, both: Civil War reenactors might claim that their practice helps to prevent the recurrence of another bloody war, while in reality, they spark nostalgia for an antebellum, slave-owning South—calling forward the very resentments and violence that fueled the war in the first place.

SPs are not reenactors in the same sense as those who portray Civil War battles. There is no famous diagnosis of gangrene or Tourette syndrome to which actor and physician aspire. Instead, they play at a more general enactment, through a pursuit of a likeness to a generic or typical medical interaction. To do this, however, they need to walk the same line as historical reenactors. The roles that medical students and actors play in SP encounters operate in an agreed-upon realm of make-believe in which they are both “not actors” and “not not actors,” what Richard Schechner describes as the “liminal realm of double negativity that precisely locates the process of theatrical characterization.”57 The unpredictability of human interaction is both the reason for the use of SPs and the reason that their status as fixed points is inherently unstable.

Critics of SPs claim that too much emphasis is put on simulation in medical education at the cost of experience with “actual patients,” which threatens to make “simulation doctors” instead of actual ones;58 and advocates of SPs claim that actual patients are too idiosyncratic and vulnerable, while computer simulations are too inert.59 The implication is that SPs exist in a hierarchy of experiential value, somewhere below actual patients and above computer simulations. For the training and evaluation of physicians, however, the hierarchy is reversed: computer simulations would give the greatest amount of reproducibility across student encounters, and real patients the least. SPs, therefore, are a compromise between the rival commitments to verisimilitude and reproducibility that all proxies must negotiate.

Like some Civil War reenactors, however, simulated patients have a prophylactic function. Their use in the training of physicians is meant to achieve a standard of care that is both medically efficacious and compassionate. Just as some of Schneider’s performers cite the embodied experience of war reenactment as a kind of memory-making in defense of repetition, SPs create a buffer between trainee physicians and the more vulnerable bodies of actual patients. An awkward touch, an inappropriate question, or an incredulous tone of voice—SPs must intercept these faults and blunders of incipient doctors, including all the gestures and attitudes of miscaring that can produce discomfort or manifest as a disbelief in another’s pain and suffering.

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Suspension of disbelief would not be necessary, however, if students were interacting with people who were actually experiencing the symptoms they described. Yet while patient interaction is a crucial part of a physician’s training, it is not a viable means of comparing students. In SP scenarios, the embodiment of a simulated disease is a trained technique as well as a method for creating standardized tests. Simulation is a means of modeling behavior that always serves two purposes: to train individuals and groups in embodied habit-memories, while still providing officials with information and observations from a controlled test. Standardization works by scaling up from a controlled test to an actual implementation.

According to Barrows’s original explanation of his program, from 1968, SPs offered many advantages over actual sick people and cadavers, the only two alternatives that were suggested at that time (the text that follows is paraphrased except where quoted). SPs are preferable because:

By 1993, at a point when the standardized patient program was growing in popularity and Barrows was less defensive about its virtues, he gave these same reasons: SPs were ready and available whenever an instructor needed a patient, they could be used repeatedly, and they save the patient from mistreatment (but he doesn’t specify what costs there might be to the mistreatment of SPs). But in 1993, Barrows added an interesting argument in favor of SPs: “The standardized patient is prepared for students to perform inadequately and is prepared to be used as a teaching and assessment tool. You have no concern about the student’s making inappropriate remarks in the teaching situation or using poor examination techniques.”61

Barrows was addressing fellow physicians, so the shift to the second person is telling, as it comes at the exact moment when he is highlighting the instrumentalization of patient bodies in terms that reflect their status as living people with sensitive bodies. “They” (in contrast to “you”) are prepared to assume the status of a tool. This instrumentalization, this lack of concern about inappropriate remarks or poor examination techniques, is entirely a consequence of transforming living people into workable proxies. The process relies on the consistent and reliable reuse of SPs, but achieved without the erasure of what makes each person’s body an idiosyncratic entanglement of experiences, memories, and feelings. It cannot work without suspending disbelief at the irreducible difference between one body and another.

In her ethnography of SPs, Taylor describes the authority of “presence” that the SP achieves by being both “real” and a “simulation”:

Simulation generally is distinguished by the premise that suffering is not present—it may be there, or then, but it is not here-and-now, and that is what makes the SP performance a ‘‘safe’’ learning environment for the student. At the same time, however, everyone I have spoken with agrees that the presence of the SP as an actual person is crucial to these performances, and is what distinguishes them from other forms of “mere” simulation.62

These are the paradoxes of proxies that are at once meant to be stand-ins for real-world situations and yet still be usable. Actual embarrassment or actual pain would make the simulation untestable or unreproducible, but what is being tested, in some ways, is the ability of a physician-in-training to manage the patient’s emotional response to a diagnosis. SPs must be trained to react in ways that would imply the possibility of feelings like embarrassment, shock, or shame, while guaranteeing that those feelings will only be performances.

As Tobin Siebers discusses, the performance of disability by nondisabled actors is a way of sanitizing lived experience for a potentially uncomfortable audience by reassuring them that the person is really all right. It also rerenders the disability as a performance, turning a person’s lived experience into signifiers of virtuosic impersonation: “the audience perceives the disabled body as a sign of the acting abilities of the performer—the more disabled the character, the greater the ability of the actor.”63 By disarticulating bodiness (being human) from bodily particularity, practitioners claim that SPs save both patient and student the embarrassment of vulnerability—the vulnerability of sharing one’s pain and the vulnerability of being a novice professional. But they also treat disability as superficial—something to be worn—and an experience that can be made transparently accessible.

The standardized patient program, using the logic of testability, operates with a logic of prototypical able-bodiedness. Like the prototypical whiteness of test images, which treat white skin as the default and nonwhite skin as a special case, the program begins with the “able” and “healthy” body as the unmarked default condition, upon which illness and disability can be layered. For medical educators, the widespread use of able-bodied actors to perform illness and disability works to foreclose vulnerability and to make the entire scenario a low-stakes affair. It also mirrors a widely discredited technique for building sympathy for disability by having able-bodied people try to navigate the world blindfolded, in a wheelchair, or otherwise impaired.64 For SP educators, the low stakes of disability masquerade and simulation open up possibilities for using SPs to combat other problems. This is because, as Barrows long argued, SPs are transitional aids; bridging the world of simulation with the world of lived reality. The nature of this transition can be varied. It can mean the honing of skills and knowledge, but it can also mean the recalibration of empathy and prejudice.

In one study in Germany, involving thirteen SPs and 200 medical students, researchers had the SPs wear “obesity simulation suits.”65 The aims of the study were twofold: to elicit from the students accurate body mass estimates; and to measure the prevalence of antifat stigma. By the authors’ own metrics, the study was a success. Not only did the students accurately predict the range of body mass index scores, the encounter demonstrated that there were widespread antifat attitudes. The masquerade became a teachable moment, free of real vulnerability. The obesity suit, overencoding the body of an SP, transformed a real medical stigma into sanitized data. The authors describe the strengths and limitations of the study as follows: “The study was conducted only in a simulated environment and not with real patients with obesity.”66 The argument implicit here is that no vulnerable people were harmed in the production of the data, though vulnerability and harm were modeled and measured. The standardized patient program became a kind of machine, able to model and simulate prejudice, and while doing so create usable data. But to do so, embodiment must be turned into spectacle.

A number of standardized patient programs have begun to make an active effort to incorporate people living with disabilities into their corps of SP actors. At the Tufts University School of Medicine, for example, medical educators employ patients with disabilities as SPs and equip them with, for instance, a complaint about shoulder pain. Shoulder pain is specifically chosen for its banality: “It is not only a common problem for all adults, but it has particular implications for patients with physical disabilities, as many are critically dependent upon shoulder function.”67 In designing the scenario, the educators chose not to inform the students that their SPs would have a disability. In their reasoning, “the interaction would be more realistic, and they (the students) would have an opportunity to grapple with their own reactions, including their biases, in a setting that closely resembles actual practice.”68 What is remarkable about the Tufts case is not only the use of SPs with disabilities, but that the “reveal” in the scenario plays on the expectation that typical SP encounters will not use actors living with a disability. Like the obesity study in Germany, it uses the encounter as a provocation, to elicit stigma and reflection. Unlike the obesity study, it relies on both the vulnerability of people living with disabilities and the potential for embarrassment on the part of students.

There is a risk in dismissing the theatrical elements of knowledge production and the ways that knowledge is secured through ritual as somehow giving lie to the process. That is to say that the purpose of unearthing proxies and their rituals is not to highlight moments of fantasy and make-believe as inherently deficient; the fact that proxies are in widespread use does not mean that we can unlock the contrivance of scientific and technological meaning-making by simply showing proxies to be artificial. It is true that these systems rely on contrivances, but that is not what makes them susceptible to critique. There is no “mere” theater. Instead, there is only a deeply interwoven set of techniques of embodiment and technologies of memory that tie together action, word, setting, and practice to form a context in which things can be made discernable, measurable, and judged.

MODELS, PATIENTS, AND MODEL PATIENTS

Barrows’s first SP was a twenty-two-year-old woman named Rose McWilliams, whom he met through USC’s Art Department, where she worked as an artist’s model. According to Barrows, McWilliams was coached to “have a paraplegia, bilateral Babinskis, dissociated sensory loss, and a blind eye.”69 She was soon joined by a second SP, Lynn Taylor, who was another model. Initial responses to the standardized patient program were harsh; few physicians outside of USC thought that the project was viable. The program was maligned for its proximity to Hollywood, its reliance on a vapid form of performance, and the artifice of simulating disease.70 These criticisms were often attached, in particular, to the women working as SPs, whose well-honed work as professional performers brought them into the medical establishment as programmable patients.

In 1965, in the early stages of the program, the Associated Press learned of Barrows and Abrahamson’s work and syndicated a story in several papers. In the San Francisco Chronicle, the headline read “Models Who Imitate Patients: Paradise for Medical Students” (figure 5.4); in the Los Angeles Herald Examiner, “Hollywood Invades USC Medical School”; and in Newsday, simply “Model Patients” (figure 5.5 shows a drawing and caption from the story). The story, as it was rewritten from a wire report, always began the same way: “Scantily clad models are making life a little more interesting for University of Southern California medical students,” and then went on to describe Taylor as “a shapely brunette” and McWilliams as “the blonde.”71 SPs echo, therefore, the pattern that the history of test images set forth: women’s sexualized bodies are folded into a technical bureaucracy and a technique of knowledge formation, which both renders them as objects of analysis and erases their labor as stand-ins.

Figure 5.4

An artist’s interpretation of a headline, image, and caption from a San Francisco Chronicle article (September 28, 1965). The caption reads, “The Easy Way to Learn Medicine.” The image portrays one of the original standardized patients, Rose McWilliams, with Howard Barrows and one of his medical students. Image: R. R. Mulvin.

Figure 5.5

An artist’s interpretation of an image and caption from a Newsday article (September 28, 1965) about SPs, also showing McWilliams, Barrows, and Goodman. Image: R. R. Mulvin.

Like the Playboy that was supposedly lying around a digital image processing lab (discussed in chapter 3), ingenuity is understood through the instrumentalization of a female model’s body. The origins of the Lena image are recounted as the confluence of boredom, innovation, and happenstance. This is repeated in the account of SPs and the way that having models ready-at-hand at USC (on a campus famous for its ties to the entertainment industry) was narrated as a fortunate coincidence. In neither case do the makers of these standards take credit for seeking out women’s bodies as templates. Instead, the disavowal is in part what allows this process to reoccur throughout history and across disciplines. If accepting responsibility for using women as test instruments threatens in some way the technical process that those bodies enabled and provokes a confrontation with the forces of desire, sexualization, or even an unjust power differential, then the originators need some way to shore up the technical aspects of their choice as a means of distancing themselves from the cultural implications.

By all evidence, the Associated Press account was not the story that Barrows sought to tell about his new program. He saw the use of the art department as a canny strategy to harness existing university resources. In a handbook that he produced for interested educators in 1971, Barrows reaffirmed his commitment to this method: “If I were to start a program elsewhere, my first move would be to inquire at the local drama department or a local amateur or professional acting society as to whether or not there would be potential interest [in being an SP].”72 He is quick to deny the claim that his program is unduly indebted to its proximity to Hollywood. He says that during a sabbatical year at McMaster University, in Hamilton, the “Steel Mill Capital of Canada,” he relied on “a housewife” who “became one of the most effective and versatile simulators with whom I have worked.”73

Barrows’s advice to others hoping to establish their own standardized patient programs is to seek out a facility for SP work wherever it could be located: “Do not ever ignore interested technicians, secretaries, housewives, and so on. Motivation is the real key.”74 These suggestions expose an implicit gendering of SP labor. The instructions, with a certain level of frankness, are addressed to medical professionals whose expertise attunes them to “housewives” and “secretaries” who might have interest in SP work. Just as, in the history of the Lena image, a Playboy centerfold was ready-at-hand to become a test image, the women in Barrows’s world are a ready set of model patients, already stand-ins. Meanwhile, all the images of USC medical students in the early days of the program depict men, and the early models were all identified as women. Although contemporary standardized patient programs seek out a more diverse cohort of actors, the origins of the program are thrown into sharp relief: women possess an immanent instrumentality that can be used by physicians (men) and educators (also men) who should be ready to take advantage of it.

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As the standardized patient program grew, the range of people who would become actors also expanded. SP work now lends itself to a wide array of potential actors, as physicians need training across a broad range of bodies, demographic attributes, and personality types. But the labor of being an SP is also often most amenable to a worker with already precarious or intermittent work. Who can be a proxy is partly determined by who has the time and needs the money to learn the techniques of embodied illness and disease. Theater departments and local theater companies are a ready resource for acting ability, but as Barrows’s list of other possible actors—“technicians, scientists, housewives”—indicates, financial need is also a good motivation, and flexible working hours are an added bonus.

What Barrows foresaw was that SP jobs could be part of a person’s pool of possible “gig work” assignments. In his 1993 summary of the benefits of the standardized patient program, he wrote that SPs were preferable to real patients because they were always available (“Unlike real patients, the standardized patient can be available at any time and available in any setting”) and their service is transactional (“The standardized patient is paid to be examined over and over again by numerous students”).75 The so-called gig economy is often ascribed to the twenty-first century (in the Global North) and the deindustrialization of labor forces, in which an increasing number of people piece together a living through many part-time, nonpermanent positions and full-time employment becomes more rare (along with benefits like a pension, disability and parental leave, and sick time). SP work in the 1960s and 1970s was imagined as part of a person’s piecework assemblage of jobs, and SPs are drawn from pools of people just making do. For professional or amateur actors, SP work is a supplement to their intermittent work and often described as a way of honing and sharpening their performance skills.76 For everyone else, SP work is a way of instrumentalizing something that everyone has: a body that is always ready to be medicalized.

The work of SPs is vital to how physicians are trained, in a standardized way, and licensed as professionals. Their work is infrastructural and enacted through their bodies and performances, employing their status as living people, able to stand in for others. To understand what it means to perform infrastructural labor as an SP is to understand the ways that the work is rewarded, is regarded as a form of employment, and (possibly) reflects a relationship to notions of professionalization and expertise. Rose McWilliams and Lynn Taylor, the first SPs, were paid 45 dollars an hour in 1965 (approximately 370 dollars an hour in 2020). According to the reporting at the time, this was the fee that they normally charged for modeling work.77 This pay treated their professional skills as models as transferrable to their work as model patients and as equally worthy of remuneration. Today, SPs make an average of 15 dollars an hour, though they can earn as little as 7 dollars and as much as 25 dollars.78 In general, more experience does not lead to more pay. However, invasive exams do earn more—on average 40 dollars an hour—though one report notes that working as an SP for breast and vaginal exams can earn as much as 55 dollars an hour because these patients “are also instructing students how to perform them.”79

Figure 5.6 shows a fee schedule from the University of South Florida, readily obtained from the Health Sciences Center’s website.80 By looking at the entire one-page document, we can see an encapsulation of the standardized patient program, how the program is presented to prospective SPs, and the ways that it presents a hierarchy of expertise, which follows an axis of bodily invasiveness. The form begins with a title that is immediately asterisked: in reading the heading, potential SPs should also note that all their encounters may be observed and/or audio- or video-recorded. Observing, and potentially recording, SP encounters are key elements of making testable interactions.

Figure 5.6

Fee schedule for SP work from the University of South Florida Health Sciences Center.

The remainder of the form proceeds through an increasingly intimate menu of possible interactions. It begins with “Interviewing only,” in which SPs may be able to “play” (put in scare quotes in the original) themselves or a character, and then proceeds to “Physical Examination Only” and “Focused History and Physical,” which combines the first two stages while homing in on a particular ailment, and then continues to “Comprehensive History and Physical,” which lasts up to an hour. The list ends with “Special Physical Examination Consultants,” which is an opportunity for SPs willing to train in receiving breast, pelvic, and prostate examination (including penile and testicular examination).

The ladder of possible encounters includes a great deal of nested information. At each rung, the document notes whether the SP will require special training or preparation to participate. For instance, at the “Focused History and Physical” level, SPs may be trained to act out a specific ailment, and at the next stage, SPs can be asked to evaluate students in their “interpersonal and communication” skills. Each level also increases in hourly pay as SPs are asked to do more, be more trained, or permit greater amounts of physical touch and bodily investigation. SPs at the entry level are paid 7 dollars an hour, but SPs at the comprehensive level can be paid 20 dollars an hour if they are prepared to evaluate the students, and an additional 5 dollars an hour if they will permit a breast exam.

This document demonstrates how the line between “make-believe” and the actual lived boundary of a person’s body must be inscribed in the management of proxies. It shows how an SP is both not a patient and not not a patient. The more invasive examinations are accorded more pay not only because of their potential effects on the actor’s body, but also because of the expertise that this invasiveness elicits—an expertise tied to living and sensing in that actual body. Regular SPs are coached not to give physicians-in-training any advice during the examination, since it’s beyond the scope of their assignment and any advice they gave would taint the exam results. But SPs who opt for invasive examinations are an exception; they are often expected to coach students in practice scenarios because they are the only ones who can be sure if invasive procedures “feel right.” Expertise and bodily sovereignty are aligned in this case, which only emphasizes how much they can be severed in the case of typical SP scenarios.

In the process of legitimating standardized patient programs, the work of simulating disease and disability has been transformed from a professional skill (that of modeling) to a low-wage, part-time job, with little to no prospects for a raise or advancement, and one in which a person’s value as a resource is tied to their bodily affordances and trainability as a performer. Temple University’s guide for aspiring SPs notes that most of their actors earn less than 2000 dollars per year from their work.81 And Temple’s program is the rare case where guidance is provided.

As SP education expanded and gained legitimacy, it needed to do so through the logic of standardization. The standardized patient program needed to be reliable, verifiable, and reproducible, which meant that SPs could be only one node in the evaluation system. By treating SPs as amateurs, the process also minimizes their role in evaluating physicians. When McWilliams and Taylor first began as SPs, Barrows gave them the responsibility of recording what transpired with the student. While SPs still complete questionnaires after their interactions to record their experiences, the weight of the evaluation falls on educators, through one of a few standardized evaluation templates.82 Some standardized patients have also demanded more input in evaluating student physicians on the grounds that their subjective responses to trainee physicians, as well as their implied resemblance to any potential patient, give them special authority to speak for patients more generally.83 Meanwhile, standardized patient program coordinators must intervene when SPs appear to overstep their roles, like when an actor provides “feedback that seems to tread into the domain of medical expertise.”84 SPs who demand more say in the evaluation of students are negotiating for greater power over their own representation in a standardization process.

When bodies are treated as proxies of physical and affective measurement, standardization will necessarily require political negotiation over who has the power to access and describe those measurements. SP demands for more input in the evaluation of trainees must be folded back into the knowledge infrastructures of the medical system, in which the cooperation of these actors is necessary to maintain a coherent pedagogical apparatus. As Greg Downey writes, “workers formally or informally engaged in complex information labors … are continually re-embedded in each new round of the knowledge infrastructure.”85 These particular workers hold tremendous power because of their capacity to leverage their real bodies to become proxies for anyone’s potential maladies.

IMAGINING NORMAL

In a training video produced by Barrows in 1988, he demonstrates the steps involved in developing an SP encounter. The video, entitled Acute Paralysis of Both Legs in a Young Woman, shows how a physician should take a patient’s history and conduct a physical exam.86 For the performer, Barrows describes the development of the case, the dress rehearsal, and the final encounter. He instructs the young woman about how to simulate paralysis. When he pokes her leg with a sharp pin and asks her, “Do you feel that?” she is expected to say “Feel what?” instead of “No.” The “No” would betray the artifice of the scenario—an indication that she is suppressing her actual sensation for the purpose of simulation. Instead, verisimilitude is achieved through a total denial of sensation: “Feel what?”

It is telling that Barrows would use paralysis (and specifically numbness) as a template for training SPs, as it clearly demonstrates the bifurcated identities that SPs must occupy when their bodies are both scripted and lived in: the SP feels the pinprick but must comport herself as if she does not. This is the embodiment of as if, acting as a present surrogate for an otherwise absent Other. At the end of his interaction with the actor, Barrows simply asks, “Can you conceive of all of this happening to you?”87 Barrows’s question is a final attempt to make sure that the act of imagination that the SP participates in will accord with the experiential reality of the encounter.

By breaking the world into manageable chunks, standard makers must make certain decisions about how best to represent the world. These choices about the best way to represent the world for the given task take the form of proxies, which are used to build and maintain standards and have real effects on their representational and distributive capacities. SPs have the potential to irritate the smooth production of a standard of care on the very terms of this proxy logic. A person cannot be a simple, manageable chunk of the world, and SP encounters are highly scripted because their manageability is threatened by the possibilities of improvisation and the idiosyncrasies of a person’s body and temperament. Moreover, SPs betray the always-performative separation of the world out there and the world in here. While they are employed as supposedly normal people play-acting as ill, they also have their own, unique, leaky bodies that breach the membrane between the testing scenario and the outside world. In the history of proxies, the viability of a standard is endangered when its representational capacities are called into question or when the functional separation of inside and outside breaks down. SPs are special because they work only through their capacity to bridge both inside and outside.

The standardized patient program is partly a technique for helping train doctors to see patients as more than a history of symptoms, and instead to engage them as agents of their own care. Standards operate through normative conceptions of how the world ought to operate. The hope for more humane medical care or of more empathetic medical professionals is an optimistic fantasy that needs to be encoded in new standards and norms. As these norms, standards, and procedures play out, they will do so, partially, through the bodies of SPs who are trained and practiced in the art and technique of remembering a history that isn’t theirs, possessing symptoms that aren’t theirs, and responding to the probing questions and hands of doctors-to-be in ways that are sympathetic to the many and varied patients out there. SPs have an impossible but necessary task to stand in as proxies for all of us. Although the standardized patient program relies on a suspension of disbelief, it is based on a certain fact: everyone will need care at some point in their lives, and everyone deserves empathy and recognition of their pain.

Notes

  1.     1.    Kevin Ferguson, “How Do You Teach Medical Students Bedside Manner? Hire an Actor,” Off-Ramp, August 20, 2015, radio program, https://www.scpr.org/programs/offramp/2015/08/20/44184/how-do-you-teach-medical-students-bedside-manner-h/ (emphasis added).

  2.     2.    Janelle S. Taylor, “The Moral Aesthetics of Simulated Suffering in Standardized Patient Performances,” Culture, Medicine, and Psychiatry 35, no. 2 (2011): 138 (emphasis added).

  3.     3.    Here, I am referring to the work of Arlie Russell Hochschild, who coined the term “emotional labor” during her study of airline attendants and bill collectors, though the term is now widely used in a range of disciplines and denotes a much wider set of practices than Hochschild’s originally restrained scope. She intentionally excluded doctors from her original study of those susceptible to the regimes of emotional labor because their emotions were not supervised. However, since the time she first published her book, The Managed Heart, this kind of supervision has become a necessary component of medical education and licensing, as seen in the standardized patient program. Arlie Russell Hochschild, The Managed Heart: Commercialization of Human Feeling, 2nd ed. (Berkeley: University of California Press, 2012).

  4.     4.    This has been the case in Canada since 1993 and the United States since 2004. The first physicians who were required to pass the SP test were foreign-trained physicians trying to practice in either country. Before it seemed necessary or acceptable to require domestically trained physicians to pass a test using SPs or to impose it as a licensing requirement, it was field-tested on “outsiders” of the Canadian and American medical systems. Brian David Hodges and Nancy McNaughton, “Who Should Be an OSCE Examiner?” Academic Psychiatry 33, no. 4 (2009): 282–284; L. Stephen Jacyna and Stephen T. Casper, The Neurological Patient in History (Rochester, NY: University of Rochester Press, 2012); Roy Porter, “The Patient’s View: Doing Medical History from Below,” Theory and Society 14, no. 2 (1985): 175–198.

  5.     5.    Sara Ahmed, The Promise of Happiness (Durham, NC: Duke University Press, 2010); Patricia T. Clough, “The Affective Turn: Political Economy, Biomedia and Bodies,” Theory, Culture & Society, 25, no. 1 (2008): 1–22; Ruth Leys, The Ascent of Affect (Chicago: University of Chicago Press, 2017).

  6.     6.    Hodges and McNaughton, “Who Should Be an OSCE Examiner?” 282.

  7.     7.    Adam I. Levine and Mark H. Swartz, “Standardized Patients: The ‘Other’ Simulation,” Journal of Critical Care 23, no. 2 (2008): 179–184.

  8.     8.    Physicians proceed through twelve examinations, with an interview and physical examination of a patient that lasts fifteen minutes and a ten-minute station where the examinee writes a record of the SP’s history and physical findings.

  9.     9.    Donald E. Melnick, Gerard F. Dillon, and David B. Swanson, “Medical Licensing Examinations in the United States,” Journal of Dental Education 66, no. 5 (2002): 595–599.

  10.   10.    Howard S. Barrows, Paul R. Patek, and Stephen Abrahamson, “Introduction of the Living Human Body in Freshman Gross Anatomy,” British Journal of Medical Education 2, no. 1 (1968): 33–35.

  11.   11.    Howard Barrows and Stephen Abrahamson, “The Programmed Patient: A Technique for Appraising Student Performance in Clinical Neurology,” Journal of Medical Education 39 (1964): 802–805.

  12.   12.    SPs and related persons have been given many other names as well: “patient instructor,” “patient educator,” “professional patient,” “surrogate patient,” and “teaching associate.” Howard S. Barrows, “Simulated Patients in Medical Training,” Canadian Medical Association Journal 98 (1968): 674–676; Howard S. Barrows, Simulated Patients (Programmed Patients): The Development and Use of a New Technique in Medical Education (Springfield, IL: Charles C. Thomas, 1971).

  13.   13.    Peggy Wallace, “Following the Threads of an Innovation: The History of Standardized Patients in Medical Education,” Caduceus 13, no. 2 (1997): 6.

  14.   14.    C. Donald Combs, “Humans as Models,” in Modeling and Simulation in the Medical and Health Sciences, eds. John A. Sokolowski and Catherine M. Banks (Hoboken, NJ: John Wiley & Sons, Inc., 2011), 92.

  15.   15.    Michel Foucault, The Birth of the Clinic, trans. A. M. Sheridan (London: Routledge, 2003[1973]), 122.

  16.   16.    Hsuan L. Hsu and Martha Lincoln, “Biopower, Bodies … the Exhibition, and the Spectacle of Public Health,” Discourse, 29, no. 1 (2007): 23.

  17.   17.    John Forrester, “If p Then What? Thinking in Cases,” History of the Human Sciences 9, no. 3 (1996): 1–25.

  18.   18.    University of Texas Medical Branch, “Template for Standardized Patient Script,” http://www.utmb.edu/ocs/FacDevTools/script-template.asp.

  19.   19.    Baylor College of Medicine, “Standardized Patient Script Example: Back Pain Script,” https://www.bcm.edu/education/schools/medical-school/programs/standardized-patient-program/become-a-standardized-patient/script-example.

  20.   20.    Rachel Hall, The Transparent Traveler (Durham, NC: Duke University Press, 2015), 4.

  21.   21.    The MIRS document is adapted from the Arizona Interview Rating Scale (ACIR), developed by Paula Stillman, and it is written to reflect the 2001 Kalamazoo Consensus on “Essential Elements of Communication in Medical Encounters.” Gregory Makoul, “Essential Elements of Communication in Medical Encounters: The Kalamazoo Consensus Statement,” Academic Medicine 76, no. 4 (2001): 390–393.

  22.   22.    Elaine Scarry, The Body in Pain: The Making and Unmaking of the World (New York: Oxford University Press, 1985), 12.

  23.   23.    Scarry writes that “if property (as well as the ways in which property can be jeopardized) were easier to describe than bodily disability (as well as the ways in which a disabled person can be jeopardized), then one would not be astonished to discover that a society had developed sophisticated procedures for protecting ‘property rights’ long before it had succeeded in formulating the concept of ‘the rights of the handicapped.’” The Body in Pain, 12.

  24.   24.    Scarry, The Body in Pain, 13.

  25.   25.    Ronald Melzack, “The McGill Pain Questionnaire: Major Properties and Scoring Methods,” Pain 1, no. 3 (1975): 277.

  26.   26.    Lochlann Jain, Injury: The Politics of Product Design and Safety Law in the United States (Princeton, NJ: Princeton University Press, 2006); Michelle Murphy, Sick Building Syndrome and the Problem of Uncertainty: Environmental Politics, Technoscience, and Women Workers (Durham, NC: Duke University Press, 2006).

  27.   27.    Kelly M. Hoffman, Sophie Trawalter, Jordan R. Axt, and M. Norman Oliver, “Racial Bias in Pain Assessment and Treatment Recommendations, and False Beliefs about Biological Differences between Blacks and Whites,” Proceedings of the National Academy of Sciences 113, no. 16 (2016): 4298.

  28.   28.    Hoffman et al., “Racial Bias,” 4297–4298.

  29.   29.    Hoffman et al., “Racial Bias,” 4300.

  30.   30.    Soraya Chemaly, Rage Becomes Her (New York: Atria, 2018); Francis B. Nyamnjoh, “Black Pain Matters: Down with Rhodes,” Pax Academica 1, no. 2 (2015): 47–70.

  31.   31.    Elena Ruíz, “Cultural Gaslighting,” Hypatia 35, no. 4 (2020): 687–713; Harriet A. Washington, Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present (New York: Doubleday Books, 2006).

  32.   32.    Ruíz, “Cultural Gaslighting.”

  33.   33.    Angelique M. Davis and Rose Ernst, “Racial Gaslighting,” Politics, Groups, and Identities 7, no. 4 (2019): 761; Ruíz, “Cultural Gaslighting.”

  34.   34.    Barrows and Abrahamson, “The Programmed Patient,” 803 (emphasis added).

  35.   35.    Barrows and Abrahamson, “The Programmed Patient,” 803 (emphasis added).

  36.   36.    Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (Englewood Cliffs, NJ: Prentice Hall, 1962), 5.

  37.   37.    Rosemary Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997), 8; see also Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (Minneapolis: University of Minnesota Press, 2017).

  38.   38.    Robert McRuer, “Compulsory Able-Bodiedness and Queer/Disabled Existence,” in The Disability Studies Reader, 3rd ed., ed. Lennard Davis (London: Routledge, 2010): 383–392.

  39.   39.    Lennard Davis, Enforcing Normalcy: Disability, Deafness, and the Body (London: Verso, 1995), 2.

  40.   40.    Meryl Alper, Giving Voice (Cambridge, MA: MIT Press, 2017); Hamraie, Building Access; Alison Kafer, Feminist, Queer, Crip (Bloomington; Indiana University Press, 2013).

  41.   41.    Colin Barnes, “Understanding the Social Model of Disability,” in Routledge Handbook of Disability Studies, eds. Nick Watson, Alan Roulstone, and Carol Thomas (London: Routledge, 2012), 12–29.

  42.   42.    Barnes, “Understanding,” 18.

  43.   43.    Kafer, Feminist, Queer, Crip; Tom Shakespeare and Nicholas Watson, “The Social Model of Disability: An Outdated Ideology?” Research in Social Science and Disability 2 (2002): 9–28; Jonathan Sterne, “Ballad of the Dork-o-phone: Towards a Crip Vocal Technoscience,” Journal of Interdisciplinary Voice Studies 4, no. 2 (2019): 179–189; Shelley Tremain, “On the Subject of Impairment,” in Disability/Postmodernity: Embodying Disability Theory, eds. Mairian Corker and Tom Shakespeare (New York: Bloomsbury, 2002); Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996).

  44.   44.    Kafer, Feminist, Queer, Crip, 9.

  45.   45.    Kafer, Feminist, Queer, Crip.

  46.   46.    Granola bars and mints are also the things I carried with me while interviewing for jobs. It is possible that they are a standard part of the equipment that many people use to maintain their bodies and minimize the discomfort that those bodies might compel in other people. Leslie Jamison, The Empathy Exams (Minneapolis: Graywolf Press, 2014), 3.

  47.   47.    Louise Aronson, “Examining Empathy,” The Lancet 384, no. 9937 (2014): 16.

  48.   48.    Aronson, “Examining Empathy,” 16.

  49.   49.    Constantin Stanislavski, An Actor Prepares (London: Routledge, 1989), 12.

  50.   50.    David Mendel, Proper Doctoring: A Book for Patients and Their Doctors (New York: New York Review Books Classics, 2013[1984]), 5.

  51.   51.    Mendel, Proper Doctoring, 9.

  52.   52.    Mendel, Proper Doctoring, 19.

  53.   53.    Mendel, Proper Doctoring, 20.

  54.   54.    Rebecca Schneider, Performing Remains: Art and War in Times of Theatrical Reenactment (London: Routledge, 2011), 41.

  55.   55.    Schneider, Performing Remains, 41 (emphasis in original).

  56.   56.    Dylan Mulvin, “Media Prophylaxis: Night Modes and the Politics of Preventing Harm,” Information & Culture 53, no. 2 (2018): 175–202.

  57.   57.    Richard Schechner, Between Theatre and Anthropology (Philadelphia: University of Pennsylvania Press 1985), 97.

  58.   58.    Taylor, “The Moral Aesthetics.”

  59.   59.    Christopher Pearce and Steve Trumble, “Computers Can’t Listen: Algorithmic Logic Meets Patient Centredness,” Australian Family Physician 35, no. 6 (2006).

  60.   60.    Barrows, “Simulated Patients in Medical Training,”; Howard S. Barrows, Paul R. Patek, and Stephen Abrahamson, “Introduction of the Living Human Body in Freshman Gross Anatomy,” Medical Education 2, no. 1 (1968): 33–35.

  61.   61.    Howard S. Barrows, “An Overview of the Uses of Standardized Patients for Teaching and Evaluating Clinical Skills,” Academic Medicine 68 no. 6 (1993): 444.

  62.   62.    Taylor, “The Moral Aesthetics,” 155.

  63.   63.    Tobin Siebers, “Disability as Masquerade,” Literature and Medicine 23, no. 1 (2004): 18.

  64.   64.    Sasha Constanza-Chock, Design Justice (Cambridge, MA: MIT Press, 2020); Kafer, Feminist, Queer, Crip.

  65.   65.    Anne Herrmann-Werner, Teresa Loda, Lisa M. Wiesner, Rebecca Sarah Erschens, Florian Junne, and Stephan Zipfel, “Is an Obesity Simulation Suit in an Undergraduate Medical Communication Class a Valuable Teaching Tool? A Cross-sectional Proof of Concept Study,” BJM Open 9 (2019): e029738.

  66.   66.    Herrmann-Werner et al. “Obesity Simulation Suit.”

  67.   67.    Linda Long-Bellil et al., “Teaching Medical Students about Disability: The Use of Standardized Patients,” Academic Medicine 86, no 9 (2011): 1166.

  68.   68.    Long-Bellil et al., “Teaching Medical Students about Disability,” 1166.

  69.   69.    Barrows, “Overview,” 446.

  70.   70.    Wallace, “Following the Threads.”

  71.   71.    “Models Who Imitate Patients: Paradise for Medical Students,” San Francisco Chronicle, September 28, 1965.

  72.   72.    Barrows, Simulated Patients, 15.

  73.   73.    Barrows, Simulated Patients, 14.

  74.   74.    Barrows, Simulated Patients, 15.

  75.   75.    Barrows, “Overview,” 444 (emphasis added).

  76.   76.    This was precisely the context in which Kramer and his friend Mickey became SPs in an episode of the television program Seinfeld. Kramer was a quintessential gig worker and (sometimes) actor. One of the jokes in the Seinfeld episode, “The Burning,” in which Kramer must perform as a patient with gonorrhea, involves Kramer and Mickey escalating their SP performances to the point of absurdity and competing for the “best” diseases to perform. Barrows, Simulated Patients; Emily Cegielski, “For Actors, Pretending to Be Sick Can Pay Off,” Backstage.com, http://www.backstage.com/news/for-actors-pretending-to-be-sick-can-pay-off/.

  77.   77.    “Models Who Imitate Patients.”

  78.   78.    Lisa D. Howley, Gayle Gliva-McConvey, Judy Thornton, and Association of Standardized Patient Educators, “Standardized Patient Practices: Initial Report on the Survey of US and Canadian Medical Schools,” Medical Education Online 14 (2009): doi: 10.3885/meo.2009.F0000208.

  79.   79.    Lena H. Sun, “Demand Is High for Pretend Patients,” Washington Post, October 14, 2011, A1.

  80.   80.    See https://health.usf.edu.

  81.   81.    Temple University School of Medicine, “Standardized Patient Program: Questions and Answers about Working as a Standardized Patient for Temple University School of Medicine” (2013): https://medicine.temple.edu/sites/medicine/files/files/FAQs.pdf.

  82.   82.    Richard Terry, Erik Hiester, and Gary D. James, “The Use of Standardized Patients to Evaluate Family Medicine Resident Decision Making,” Family Medicine 39, no. 4 (2007): 263.

  83.   83.    Taylor, “The Moral Aesthetics.”

  84.   84.    Taylor, “The Moral Aesthetics,” 156.

  85.   85.    Greg Downey, “Making Media Work: Time, Space, Identity, and Labor in the Analysis of Information and Communication Infrastructures,” in Media Technologies: Essays on Communication, Materiality, and Society, eds. Tarleton Gillespie, Pablo Boczkowski and Kirsten Foot (Cambridge, MA: MIT Press, 2014), 164.

  86.   86.    Howard S. Barrows, Simulated Patient Training: Acute Paralysis of Both Legs in a Young Woman (Chapel Hill, NC: Health Sciences Consortium, 1988).

  87.   87.    Barrows’s original simulation, for a patient whom he gave the name “Patty Dugger,” was also paraplegic, and in an early newspaper article about the program, it mentions that Barrows’s first patients were trained to simulate (presumably among other things) paralysis, loss of sensation, blindness, and abnormal reflexes. Wallace, “Following the Threads”; “Models Who Imitate Patients.”