0.1.5: Gifts not Objects

The specimen is a gift. It was taken, and, in the context of this study, it was often taken without the record of consent that would pass muster for an institutional review board (IRB). Thinking of the specimen in this way shifts the relationship between researcher and the things they study, and it is indebted to the scholarship of Indigenous researchers who have spent decades trying to untangle the western academy’s extractive epistemics (0.1.3; 4.1.3).

To consider the specimen as a gift first requires an understanding of relationality. Relationality, as I am using it, is not in the kind of social constructivist approaches to epistemics argued for by new materialists who argue for the inclusion nonhuman agencies and perspectives in academic research and reach for non-hierarchical philosophies. These theoretical frames are used in western contexts as methods to contradict and circumvent Cartesian, Hegelian, and Heideggerian philosophical assumptions: these scholars are trying to imagine worlds without colonial, fascist, or capitalistic ideological baggage (2.4.1; 2.4.2).¹ Indigenous relationality instead lies in a combined worldview and knowledge system which is common to many Indigenous traditions, especially traditions from the North American tribes from which many of my scholarly interlocutors hail. As I am a cis, heterosexual, settler colonial white man, my understanding of this approach is both limited and biased, so I have chosen to borrow more heavily from the writing of Indigenous scholars to describe this approach themselves.

Relationality refers to an array of interrelated epistemic, ontological, methodological and axiological frameworks shared by Indigenous peoples and researchers.² Relationality connotes the communal, familial, tribal, and environmental connections which enable rich, nuanced, and unique understandings of the world. I am indebted to Shawn Wilson’s book Research is Ceremony for my own understanding of this approach. In the book a research interlocutor and interviewee, Peter, articulates how relationality is about connection:

It’s collective, it’s a group, it’s a community. And I think that’s the basis for relationality. That is, it’s built upon the interconnections, the interrelationships, and that binds the group . . . but it’s more than human relationships. And maybe the basis of that relationship among Indigenous people is the land. It’s our relationship to the land. There’s a spiritual connection to the land. So it’s all of those things.³

This connection to land operates differently than in individualistic European ideologies. As Stan Wilson argues, Indigenous peoples “understand themselves as constituted by their relationships with all living things”, noting its distinction from other epistemic and cultural frameworks tied to the Black diaspora, Eastern religion, and feminist thinking.⁴ Shawn Wilson, paraphrasing Stan, summarizes this concept: “Rather than viewing ourselves as being in relationship with other people or things, we are the relationships that we hold and are part of.”⁵ This is why the words epistemic, ontological, methodological and axiological are used in conjunction with one another when talking about Indigenous research. For these frameworks, beliefs, and practices, “[t]he what is always already a why and a how which is another way to say ‘obligation’”⁶

Doing research from this framework is not about working on something, so much as it is generating a relationship with something and fostering all of the relationships that are bound to it. I do not research specimens as objects, I bring those lives, afterlives, and phenomena closer to me. My acknowledgement and sensitivity toward these connections makes me obligated to these actors. Shawn Wilson, and his interlocutors, argue this as relational accountability. As Wilson writes,

gaining knowledge is more like being married to someone—you don’t own your spouse or children but you do share a special relationship. It is a relationship that you are accountable to. And therefore it becomes cultural appropriation when someone comes and uses that knowledge out of its context, out of the special relationships that went into forming it. You have to build a relationship with an idea or with knowledge, just like you have to with anything or anyone else.⁷

Doing research brings us, scholars, into relationship with our research objects: we cannot be separated from them, as they are bound to us in our attention to and respect toward our research goals. Often when writing this dissertation, when asked what I am working on, I respond with something like “I do work on the history of tuberculosis”, or “I look at the moments when people are turned into research objects in medicine.” From a relational framework it would be better to articulate this statement as “I work with the history of tuberculosis, and I work with the people who were made into research objects.” Moreover, this notion of being bound to and responsible for one’s research foregrounds what Wilson and his interviewees and interlocutors describe as relational accountability. I cannot just do research on tuberculosis; instead, by doing research with the doctors and patients I have an ethical obligation to everyone who co-constitutes my research program. My attention brings with it an obligation to care for and care with these interlocutors, even those who were harming their subjects in their research (2.4.3; 4.2.3).⁸

The idea of the specimen as a gift attends to the relations and obligations I have as a researcher to the humans who were brought into the scientific record without their consent, and who remain in that record against the wishes of their decedents and communities. Understanding their gift to me, drawing their lives closer to me, makes me obligated not to see these specimens as research objects, but as the afterlives of humans who deserve justice.

This turn from object to relational interlocutor is contradictory to the argument I made in the last section (0.1.4). In describing specimens as objects, my goal was to articulate how biomedical, scientific, and western epistemics assume a certain relationship between researcher and what they study. I use the term object as a helpful shorthand to describe this relationship, but my hope is to do away with some of the ideological, epistemic, and methodological violence which the objectification of human subjects enables. I have said many times in this introduction that human specimens were people once. This claim cannot operate within a framework of the research object, because that framework assumes history, culture, and identity can be split from research materials.

In this way the goal of the dissertation is to do two things: First, it articulates a series of knowledge claims regarding the history of medicine, drawn as they are through media studies. These claims are made with the explicit intent to describe and detail the entanglement of colonialist, capitalist, and white supremacist ideologies within medical knowledge work.⁹ I argue that the entire medical epistemic apparatus is built upon a colonialist will to extract from the bodies of patients (0.1.3), and that will to extract is part and parcel of the broader medical system: the production of medical institutions (1.2.3; 1.2;5), the production of disciplinary categories (1.3.4; 2.2.3), and the production of medical specimens themselves (2.2.4; 2.3.1; 2.3.2).

Second, through a process of self-reflective critique (0.2.2), I articulate a broader interrogation of the history of medicine and the humanist approaches to these ideological systems. As Eve Tuck has argued, researchers tend to do harm-based research, which assumes that social change is produced through the revealing of harms done to individuals or communities. For Tuck this view reduces how scholars look at communities: in looking for harm they portray these communities as only being harmed, damaged, and in need of aid.¹⁰ I am less interested in the overt harm which has obviously been done in the history of medicine, because that observation has done little to address the systemic problems in medicine. Instead, I work speculatively—a frame borrowed from Saidiya Hartman and Krista Thompson—to imagine what might change if research did not depend on extraction (0.2.2; 4.2.1).¹¹

As scholars, our obligation is to those with whom we research, and this demands that we do more than just theorize and report harms. The epistemic systems in which we work are themselves a problem: they have done harm and continue to do harm to their research interlocutors; they continue to produce value for the benefit of colonial institutions that wield their cultural, economic, and epistemic power to continue to harm othered communities; they maintain western, white supremacist, capitalist systems which largely benefit able-bodied, white, middle- and upper-class peoples.

This framing extends and complicates what Harriet Washington has already convincingly argued. The medical system in the United States is one which produces two separate health apparatuses, subjects, and outcomes. She writes, “the much bewailed racial health gap is not a gap, but a chasm wider and deeper than a mass grave. The gulf has riven our nation so dramatically that it appears as if we were considering the health profiles of people in two different countries—a medical apartheid.”¹² This racist system compounds and exacerbates other modes of racial inequality, while at the same time benefitting the health of the white population.

Washington’s excoriation of America’s medical systems went hand in hand with another critique: of the history of medicine writ large. Before the turn to public histories of medicine in the late twentieth century,¹³ the history of medicine was usually told by doctors themselves; the medical libraries which held books that I used for this research were usually made from the donations of doctors who had enough disposable income to collect and preserve rare medical textbooks. The history of medicine has a long history of touting its own values, centralizing its own ‘great men’,¹⁴ and Washington’s monograph showed how that history willfully ignored the harm practiced in the pursuit of biomedical progressivism. This dissertation extends this critique to one which includes other disciplines—media studies (0.1.3), health humanities, digital humanities (4.1.2; 4.2.1), death studies (2.2.4)—all of which inform different parts of its project, into its meta-critique. So much of the western academic system is built on theft, and as scholars we are obligated to attend to this problem and seek to remedy it.