4.2.3: Refusal

Apart from the features that stress legibility to a variety of audiences (4.2.2), the Opaque Online Publishing Platform (OOPP) was designed with a single key feature—an opacity toggle, which gives users the ability to black out specific images and text based on an ethical framework of opacity (4.1.3). I will discuss the code and approach to making this feature possible later in this chapter (4.3.2; 4.3.3; 4.4.4). For this section, I want to outline how the OOPP engages with refusal through the opacity functionality.

As I discussed earlier in this chapter (4.1.3; 4.1.4; 4.2.1), this platform engages in a speculative approach to imagine how the history of medicine may be told if historians, librarians, archivists, and other knowledge workers foregrounded a subject’s right to opacity (4.1.3).The choice to black out, to consciously erase and then display the mark of that erasure, through the change of the text, shows how a practice of opacity and refusal changes the final work (4.3.4; 4.3.5). I use ‘refusal’ here as a key term in understanding how the opacity toggle is formulated, because it links with a conversation in Indigenous theory regarding the exclusion of subjects in research. By the standards of informed consent (0.1.4), refusal is an action that may be performed by a single research subject to not allow a researcher to collect their data or include them in a study after being told the scope and potential harms of the research project or after that study had begun. Refusal can, and should, extend beyond this framework. Max Liboiron and the CLEAR lab’s guidelines for community peer review describes this idea:

The term refusal in a research context refers to ethical and methodological considerations about how and whether findings should be shared with and within academia at all, as researchers often encounter information that might be intensely personal, fundamentally contextual, sacred, intended only for certain people, or needs to be earned. Offering refusal is part of ensuring research is accountable to its relations. In refusal . . . fish harvesters and villagers set the terms of how and whether research that impacts their communities should occur, be conducted, and circulate. Practicing refusal keeps community knowledge from being a Resource.¹

Liboiron and their colleagues frame western research practices as prescribed by a colonial land relation—an assumption that land can be owned, maintained, and exploited by human actors, and which maintain these relationships through violent, often genocidal, means.² This relation foregrounds an understanding that western epistemics sees the research object as a kind of land—something that may be owned, demarcated, defined, understood, stolen, and sold—which is the ultimate decider of its value (0.1.4). As Eve Tuck and K. Wayne Yang articulate, “[t]o refuse settler sovereignty is to refuse the settler’s unquestioned right to know and to resist the agenda to expand the knowledge territory of the settler-colonial nation.”³

In the case of biomedical specimen, the colonial relations in the extraction, use, and maintenance of a historical wet tissue sample, or a photograph of an organ, is predicated on the assumed value that may be continually mined by researchers—by both medical scientists and medical historians—to produce arguments. This potential value, which is nested in the specimen, usurps the rights of the historical subject, as they are not covered by the legal protections of the Health Insurance Portability and Accountability Act (HIPPA) as well as the potential protections afforded by the Native American Graves Protection and Repatriation Act (NAGPRA) (0.1.4).⁴ All of the specimens used to articulate this dissertation fall outside of these protections, due to their age, their usage in a piece of scientific research, and their anonymity.

Refusal is a necessary framework to repair this colonial epistemic relationship. Again, Liboiron writes,

When I’ve presented the methodology of community peer review to mostly white settler audiences, especially those that work with Indigenous groups, people are discursively on board, but questions tend to stray toward techniques of ensuring research is not refuted. That’s creepy . . . . Giving up the entitlement and perceived right to data is central—the central!—ethic of anticolonial sciences. You will lose things in anticolonial research that you automatically get as a researcher in colonial modes of research (regardless of your heritage).⁵

For Liboiron the priority for anticolonial research is on the communities whom that research effects, not on the potential for knowledge that may be inferred from the extracted data, specimens, and arguments. Refusal prioritizes the rights of subjects and their communities by centralizing their voices and concerns. For the OOPP, refusal becomes a mode to reflect on, and speculatively erase (4.2.1), discursive materials that were produced as a result of colonialist extractivism in research. It operates on an ethical framework that prioritizes consent in historical materials over their potential epistemic value.