2.4.3: Obligation in the History of Medicine

The implicit hierarchy which pathological researchers, Bruno Latour, and I cling to is one that assumes the value and centrality of researchers, and which erases the traces of that researcher within a published argument. In describing a life history of a wet specimen as being dependent to the person it came from, I am attending to a mode of representation which was produced by a biomedical researcher. I link those two together and emphasize that one actor, the researcher, had power over the other, the research subject, in such a manner as to manipulate a the patient and their remains into a concrete, representational object (2.3.1). Central to this critique is a designation that researchers have power—epistemic, political, cultural power.

In making this claim I intentionally omit the articulation of refusal within knowledge domains. I note 3440’s lung, its obvious extraction, and the modes that dehistoricize and dehumanize it into an research object, into a specimen (2.2.3). I have an example—a specimen of my own—to make my own argument, but it is built out of the research materials that exist, and not the bodies of subjects that refused. Saidiya Hartman and Jessica Marie Johnson discuss this problem in terms of the archival record: the only materials that were saved were the ledgers which encoded Black bodies within the carceral violence of chattel slavery.¹ Hartman and Johnson’s work shows how can one do history when that history depends on a record that is itself an object of violence.

The Henry Phipps Institute in its early years almost exclusively served European patients. While it was only a few blocks away from Philadelphia’s ninth ward, a prominently Black neighborhood which W. E. B. DuBois wrote about in his monograph The Philadelphia Negro,² almost no Black patients went to the Institute for their care. While the Phipps Institute tried to care for Black individuals with tuberculosis, these communities largely avoided the hospital. As Lawrence F. Flick writes in the Instutite’s second annual report,

The ratio of black to white has decreased during the current year. This is strange, and brings to light a social problem worthy of earnest consideration. Every inducement is offered to negroes to avail themselves of the treatment at the Phipps Institute, and there is absolutely no distinction made between the blacks and the whites. In spite of this, however, the blacks do not avail themselves of the opportunity for treatment. Tuberculosis is exceedingly prevalent among colored people, and the mortality among them is very high. They are careless in their habits, not over cleanly, and are therefore a menace to a community unless they can be brought under control and supervision.³

It was only after a decade of operation that the hospital decided to hire their first Black doctor, which improved the connection between the Institute and their Black neighbors.⁴

In this moment, Black patients performed a form of refusal—the conscious rejection of inclusion within western research (4.1.3; 4.2.3).⁵ The success of that refusal is marked by their absence in the Phipps Institute’s reports, and thus their absence in the hospital’s pathological collections. My description of specimen acquisition is at odds with the much more nuanced relationship some patients had in regard to how they were documented in medical asylums.⁶ I make my argument based on what I have, and I have made this argument to forward my end goal: to make methods that afford the divestment of stolen materials in medical collections, libraries, and museums (0.1.1; 4.2.4).

I evoke refusal at the end of this chapter to point to the crisis which the next chapters will address at a methodological level, and to channel the broader epistemic imbalance which overflows from this research project. Researchers have power over their subjects: academics define who or what the subject is, they classify it within a discursive domain, and their publications make those definitions real (0.1.4; 2.2.3). Audra Simpson denotes how the work of doing research on culture, so dependent as it is on difference, is part and parcel of a colonial process of defining hierarchy and ownership. The traditional power between researcher and research subject is one where the researcher is sovereign over that subject (0.1.4). This relationship, however, never fully exists, because refusal operates in fragmented negotiations. Simpson writes,

contemporary fieldwork with Iroquois peoples involves being pushed and pushing back, a kind of discursive wrestling. There are multiple sovereignties at work, all of which have worked to protect, to limit, to entrench what was already in place, an exercise of political will that generated an exception, in Agemben’s theorization, to the liability of the subject.⁷

The power between researcher and their subject is not as firm as I have articulated so far in in this dissertation, as so much of this relationship is negotiated within established historical, cultural, and classed hierarchies.

I point to this fraught model because the extractive problem assumes not sovereign authority but an ethical authority over the research subject. The subject contains information that may be valuable, which affords the researcher a right to claim that body in particular ways. For medical scientists in this case study, the body is valuable source of potential knowledge for medical research and practice (2.1.4; 2.2.4); and for me the body is valuable because I can make an argument through it that undermines its cultural and economic value to medical knowledge workers (0.1.4). I can make the claim that specimens are epistemically and historically tied to the bodies of patients, but in order to do so, I also deny that patient’s consent so that I can further my argument. For both arguments, a specter of potential knowledge—this promise of continued utility in our respective disciplines—reigns over method and rhetoric.

Returning to Simpson, she articulates refusal on two ends: the refusal of subjects within anthropological research and her own refusal to report that. She writes,

Rather, it is my proposition that to think about “sovereignty”—a construct which is always a bestowal and as such is deeply imperfect but critical for these moments in Indigenous/Settler-State relations—is to think very seriously about needs, and, basically, involves a calculus ethnography of what you need to know and what I refuse to write in.⁸

Western relational methods, which often implicitly or explicitly depend on Indigenous, non-white, or otherwise subaltern philosophical principles, evacuate the researcher from their research object, splitting it into discrete forms to enable analysis, and separating the researcher from that which is researched (2.4.2). For Indigenous approaches to epistemology, axiology, methodology, and ontology, a researcher can never be separate from their research interest. Knowledge in this model comes out of the closeness which is drawn together through an ever evolving relationship between the researcher and what is known.⁹ The relationship enables something to be known, but it also comes with it a form of obligation: to care for that with which you are connected (0.1.5).

I describe a connection between the specimen and the human subject and in so doing I also articulate an obligation that I have with that specimen and person. I cannot hold both the idea that they were unjustly exploited by the biomedical system and then also still exploit them for my own benefit. I cannot maintain a relationship of power—power to define, describe, and inflict meaning onto a research object—in which my own benefit supersedes the needs of my interlocutor.

At its core, this dissertation is supremely unethical. I have positioned it in such a way as to make evident the kinds of decisions I have made in order to articulate my ideas within the discourses of western knowledge.¹⁰ I make this ethical problem evident because it helps me more concretely explain the power imbalance between researcher and their research subjects, and how the ideologies of the current epistemic system maintain these imbalances for cultural, epistemic, and economic value. Our contemporary knowledge systems require distance, and in distance an implicit hierarchy, between the knowledge worker and the thing they research. This distance affords all sorts of violence to be excused. In the framework that views knowledge as the only goal, refusal on the research subject’s part is an affront to knowledge production, and thus it is a violence committed against the betterment of the culture, society, or civilization at large.

What is important for Simpson’s approach to refusal is that the scholar herself refuses to convey information that is potentially valuable—valuable for herself, for her discipline, for her institution. Ethnography, for Simpson, is done with a specific kind of calculation of how and why a scholar might reveal information, and to whom and for whom that information might benefit.¹¹

As I end this chapter and move to the next chapters that focus on methods, I invite readers to consider how refusal can be a disruptive tool in future research. Our work need not reveal everything, nor need it reveal knowledge for the purpose of epistemic, colonial, or capitalist conquest. Instead, I invite us to consider how we can attend to those communities and interlocutions with which we are entwined and those we are obligated to serve.