4.1.3: A Right to Opacity

The design work of the Opaque Online Publishing Platform (OOPP) was guided by a skepticism toward the humanistic pregivens of a digital humanities (DH) or health humanities project (4.1.2). Both of these disciplines see humanity as an assumed universal category, largely ignoring the structural ways humanist and technocultural practices have othered subaltern perspectives in their practices, technologies, and discourses.¹ Kim Gallon, arguing for a black digital humanities, asks DHers to invert their tool-centric focus, writing,

One of the essential features of the black digital humanities, is that it conceptualizes a relationship between blackness and the digital where black people’s humanity is not a given. The black digital humanities probes and disrupts the ontological notions that would have us accept humanity as a fixed category, an assumption that unproblematically emanates in the digital realm. The black digital humanities, then, might be defined as a digital episteme of humanity that is less tool-oriented and more invested in anatomizing the digital as both progenitor of and host to new—albeit related—forms of racialization.²

Gallon’s essay also articulates digital projects as a kind of “technology of recovery”, which especially focuses on digital archives as sites to contest the imagined centrality of white, colonizer perspectives and ideologies. The OOPP affords some of this digital memory making,³ but it also shows the affordances of creating tools that are built from a critique of universalist, colonialist, white supremacist humanism.

How might a medical historian or health humanist understand their relationship to their research material, if they realize that the research subject, from which their arguments are drawn, did not qualify as human in their historical moment? How might this scholar engage with their research when their research subject did not and could not qualify to consent, dissent, or maintain their bodily autonomy or agency?⁴ How can we conceptualize a history of medicine that understands that the bulk of historical specimens were stolen (1.3.5; 2.1.3)?

The notion of opacity is a way for me to address these sticky, epistemically fraught questions. The term is drawn from Édouard Glissant’s non-hierarchical and postcolonial philosophy, which critiqued western knowledge traditions. For the Afro-Caribbean philosopher, western epistemics are obsessed with the concept of a root—some essential character from which a phenomenon may understood should a researcher drill into their subject matter far enough. By defining, capturing, and controlling this essential phenomenon, these epistemics produce a totalitarian relationship with their knowledge objects. Grasping a concept, understanding it in its totality, gives way to the domination and control of that object. The logics of extraction—which always scale down into smaller, more essentialized objects—drill past a subject or object’s surface, to some discrete, knowable core; this core, at least under positivistic and predictive-based knowledge methods, implies a predictability and controllability of the phenomena and subjects who have been analyzed. In arguing for opacity, Glissant writes,

—But perhaps we need to bring an end to the very notion of a scale. Displace all reduction.

Agree not merely to the right to difference, but carrying this further, agree also to the right to opacity that is not enclosure within an impenetrable autarchy but subsistence within an irreducible singularity.⁵

The refusal afforded by opacity contradicts both the colonial will to make valuable and extract from a subject and their community, as well as the extension of surveillance central to technological practice.⁶ I affirm and continue Glissant’s framing—opacity as a right—because it establishes this thinking in a broader, albeit universalist, discourse regarding the rights of subjects writ large.

Opacity functions as a counter-ethic to this totalitarian model: it affords an individual the possibility to refuse to be ingested into these logics. I use the term ethic to point to how the western knowledge practices place the potential for value—epistemic, cultural, and monetary value (0.1.4)—over the rights of human subjects. What is important to remember is that scandals like the Tuskegee syphilis study were not aberrant phenomenon in the practice of medical science, but part of an everyday practice that was accepted and codified (4.1.4). The systems that are designed to protect patients currently, like an institutional review board (IRB), often are there to protect universities from legal recourse.⁷ The potential for knowledge always supersedes the needs and desires of a subject, because that subject must be enclosed and controlled. Glissant writes,

We are far from the opacities of Myth or Tragedy, whose obscurity was accompanied by exclusion and whose transparency aimed at “grasping.” In this version of understanding the verb to grasp contains the movement of the hands that grab their surroundings and bring them back to themselves. A gesture of enclosure if not appropriation.⁸

Opacity contradicts this mode of capture, imagining a form of knowledge work that is not bound by a desire to control.

I am skeptical as to how necessary the research objects produced by medical researchers were in the fight against tuberculosis. For many researchers, like George E. Bushnell, the organs taken from bodies seemed more useful in describing their own ideas about the disease, rather than working in a scientific observation-experimentational method (2.3.1). Material in bulk seems more epistemically valuable than any one subject’s corpse (2.3.2). My skepticism expands out to the ocean of data which is made to produce the deluge of biomedical arguments which are penned every year. Even if it is all IRB approved, there is a kind of expansive capture that makes me uneasy, mostly because those who benefit from the production of data are the knowledge workers, whose jobs, promotions, and notoriety is most at stake.⁹ That data, once it becomes ingested into a form legible for scientific study, becomes something that has potential value, a potential value that seems unquantifiable and must be protected at all costs (0.1.4).

The problem is simple: all the data in medical discourses came from someone. All the biomatter which is extracted for research; all the photographs taken of pathologies; all the cases described and published; all the data points which are harvested throughout a patient’s stay in a hospital; they all are dependent on the patient themselves—the patient’s history, the patient’s body (0.1.5; 2.1.4).

I argue that research subjects and their communities have a right to posthumous bodily autonomy—that is, the rights for subjects and communities to have a say in how their remains are treated—that supersedes the abstracted nebulous potential provided by specimens procured and produced from a patient’s body.

Opacity, in this framework, then provides a counter-model for an ethical history of medicine: one in which the rights of a research subject may be reinstalled through the conscious, careful erasure of stolen research objects from archives, datasets, and published arguments. By making the specimen opaque, knowledge workers in the history of medicine may be able to respect and reaffirm the humanity of the subjects whose lives, deaths, and afterlives make their work possible (0.1.5; 2.1.4; 4.3.4).

In this chapter I will explicate how the platform takes Édouard Glissant’s thinking into an online context. Glissant’s antiessentialism circumvents the arguments about whether something can be known in its entirety. Opacity, as an ethical framework, contests that a subject’s right to unknowability supersedes the right to knowledge outright. Within this framework, perfect knowledge, the golden standard for all sorts of positivistic epistemics, should not exist if it depends on the harvested information stolen from research subjects who gave parts of their bodies, parts of their lives, parts of their communities without their consent (0.1.5).

My framework builds on the archival platform Muruktu, and the work of archivist Kimberly Christen. Describing the libertarian cyber-utopian ideologies of the early internet, Christen argues that the ‘cultural commons’ was something that these thinkers fetishized and popularized in the context of intellectual property and its presumed value in regard to free access to information. Christen argues,

Conjuring a sense of information passed down through generations easily washes over other, more dubious ways that ‘we have inherited from the past,’ making the process seem natural and necessary without tainting it with colonial conquests or racist research agendas that pushed scientific exploration and collection practices.¹⁰

The notion that information writ large is available and accessible prioritizes what is known and what is available over the rights of research subjects. This is especially important to Christen, as she worked to develop the platform Muruktu to close access to objects based on Indigenous needs and traditions.¹¹ The theft—from body parts, to relics, to images of rituals¹²—practiced by knowledge workers is both disturbing in its scale, and in the ways contemporary institutions fight to maintain ownership of these objects. Indigenous activists have struggled, even after the passage of the Native American Graves Protection and Repatriation Act (NAGPRA) in 1990, to reclaim the material and knowledge stolen from their communities. Christen continues,

What is not generally discussed is the vast store of materials in Western museums, archives, libraries, and personal collections that were not voluntarily given, and would not generally meet the standards of prior informed consent. The colonial collecting history of Western nations is comfortably forgotten in the celebration of freedom and openness that would give ‘us’ a storehouse of materials for the common good. In fact, the commons was never a place of inclusion, nor was it ever unregulated or uncontrolled.¹³

Christen’s ideas provide the central framework which guides the Opaque Online Publishing Platform (OOPP): ideologies of the commons are interlinked with colonialist extractive practices. The OOPP was developed as a response to this history. The ability to refuse being made into a common data point is a right for every human subject.¹⁴

Moreover, past subjects, even those who have died, deserve this same right. In the context of this dissertation, all of the data which I have discussed at length depends on this colonialist-cum-digital ideological framework. I cannot, as a scholar who works toward a more ethical future, ignore this reality. I, in collaboration with the team at IDAH (4.1.1), developed the OOPP to present a speculative model for the future of the history of medicine that reflects a subject’s right to opacity as it is underpinned in the enclosure and protection of personal/communal knowledge professed and enacted by the Muruktu platform (4.2.1).