Interview with Aviva Cormier: Rare Disease and the Individual Experience

Photo by Stew Milne

Aviva Cormier is a Postdoctoral Fellow in International Humanities at the Cogut Institute for the Humanities and the Department of Anthropology, where she teaches courses in Social Bioarchaeology and Biological Anthropology. She earned her M.A. and Ph.D. in Archaeology from Boston University. Her work explores the intricate process of interpreting impairment, disability, and identity from bioarchaeological remains and archaeological contexts. Her current research illuminates the life course experiences of those affected by rare disease in the past and the community that supported them. Recent publications include a study of the possible life experiences, social identities, and community relationships of a pregnant individual from 200CE Illinois who lived into their 30s with a complex skeletal dysplasia and extreme bone infection.

Your research into ancient rare diseases is challenging the fields of bioarchaeology and paleopathology by rethinking the ways we define and conceptualize disease. Can you tell us about the stakes of this reorientation? Why is your project so necessary at the present time?

Bioarchaeologists and paleopathologists [1], work with a slightly more specific conception of disease than laypeople. The everyday usage of disease is frequently synonymous with infection; but the medical definition offered by Merriam-Webster centers around “an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions.” This disruption is made obvious by signs and symptoms observed by medical professionals, and by bioarchaeologists and paleopathologists examining an individual’s bones. As bioarchaeologists and paleopathologists are limited to the bony changes that signal a response to a disease, most conclusions identifying the disease are just estimations or assumptions, as many diseases cause similar responses in the skeleton. 

Instead of chasing the proverbial rainbow or aiming to solve the mystery of the disease, my research shifts the focus from the disease to the individual who once lived and breathed. I aim to explore the individual’s life experiences and how they interacted within their social and physical environments while living with the manifestations of a disease. By rethinking how we engage with disease in the past, we can illuminate the lifeways of people and how they lived with disease, rather than caring only about the identification of the disease. With this new focus, we can uncover universal and longstanding experiences of disease and disability, highlighting how anyone and everyone experiences at least momentary limitations during their lives, and thus effectively humanize modern marginalized communities. 

I aim to bring together the life experiences of those with rare diseases in the past and the present. While individual diseases are rare, the total number of modern people experiencing rare diseases in the US and Europe is in the millions, since as many as 7,000 rare diseases have been identified. As bioarchaeologists produce evidence of these diseases in the past, a new stakeholder emerges: the modern rare disease community. Bioarchaeologists and paleopathologists should use frameworks and conceptions of disease that expand our focus to include the lived experiences and social identities of their cultural antecedents. By exploring the perceptions, attitudes, and experiences in different historical and social contexts, we have the opportunity not only to raise awareness and advance contemporary perspectives on impairment and disability, but to contribute directly to the rare disease community, using the past to provide essential insight on possibilities in the future.

Your time at Brown studying rare diseases happens to be coinciding — right now — with a very new and virulent disease spreading across the entire globe. Has your project given you a perspective upon the current global health crisis that is not being represented in other quarters? How is your research helping you to understand the pandemic?

Bioarchaeologists pose research questions that aim to understand the impacts of disease in different environments and time periods, and among different social groups or strata. Individuals with different occupations or social roles in the past would have been exposed to different diseases and/or have had diverse disease experiences (through such variations in living environment as the palace versus the densely-packed residential area). Such elements in understanding past disease experiences must be a component of how we approach and react to the COVID-19 pandemic; physical and social environments shape how our bodies are exposed to disease and how the disease is manifested in the body. 

Bioarchaeologists and epidemiologists must incorporate underlying social and environmental constructions and constrictions into our understanding of the movement of disease.

For example, we are seeing how the current global pandemic impacts different social groups, with marginalized communities being more susceptible and lower social classes occupying the essential workforce. The Navajo nation, with 30-40% of the population lacking running water and most households being multi-generational, is experiencing a staggeringly high infection rate — greater than that of New York state. Bioarchaeologists and epidemiologists must incorporate underlying social and environmental constructions and constrictions into our understanding of the movement of disease and the experiences of those infected. Epidemiologists have an additional tool coveted by bioarchaeologists: living subjects. The voices and experiences of these marginalized communities should be heard and incorporated into response plans, with special consideration of their different environments and cultural practices.

Your current research project, on a person of indeterminate gender and ability from Illinois living between 100 and 400 AD, refuses to use normative categories of your subject, despite certain physical features being strongly suggested by the skeletal evidence. Can you talk about these political and/or ethical choices and how important they are to the conclusions you are able to draw about your subject? 

My research centers on an individual experiencing disease and activity limitations as suggested by skeletal manifestations of genetic conditions and possible widespread infection. Because of the genetic conditions and preservation issues, the standard methods for estimating biological sex from the human skeleton are not possible. However, the presence of a second individual (estimated to have an age of 28-38 fetal weeks) in the mortuary context suggests that the primary individual may have been pregnant at the time of death. (This is highly likely, but there are cases throughout the world where stillborn or naturally aborted fetuses were buried with unrelated adult individuals.) If we assume that the adult individual was pregnant at the time of death, then we assume that they had the biological sex of female. As gender is socially constructed and not biologically based, we cannot assume the individual’s gender-based solely on a pregnancy. It is probable that this individual had a female gender identity, but there are other possibilities to be ruled out, as exemplified by transgender men who experience menstruation and pregnancy in our society today. Beyond the existence of transgender individuals in modern society, there is evidence of “third genders” and non-binary gender identities in the past, from the ancient Near East to ancient Mesoamerica. An individual’s biology does not necessarily equate to their gender identity, and we obfuscate a person’s identity and humanity in treating them as such. 

Does our modern perception of male occupations and tools obscure more complex gender dynamics in the past?

Bioarchaeologists rely on other lines of evidence and context, such as burial artifacts and artistic or textual depictions, to understand the relationship between biological sex and gender in the past. Recent analysis of a 10th-century Viking warrior exemplifies this complicated discussion: the biological sex is estimated to be female, but the grave artifacts (weapons, uniform, horses, etc.) suggest a male gender. Did this individual have the gender identity of male or were some warriors female? Does our modern perception of male occupations and tools obscure more complex gender dynamics in the past? Unfortunately, the individual at the center of my research was buried similarly to others in the burial mound: simple graves with no burial goods. I am unable to draw any definite conclusions of gender from the limited context available, and thus choose to acknowledge the complexities of gender identity in the past and present by using gender-neutral pronouns when describing their life experiences. 

The Cogut Institute fellows’ seminar comprises many scholars in different fields of research. Have you noticed any common methodological tendencies or affinities across the various projects you have encountered there? Do you think there are similar shifts in the way scholars across social-scientific or humanities disciplines are situating case studies in relation to their larger projects?

As I read my colleagues’ writing this past year in the fellows’ seminar I found myself jotting down notes that I felt inspired by or that might impact my research somehow. Manuscripts dissecting poetry, literature, art, history, music, and philosophy all circled back to the person, the human, at the center of our world. Much of this research aims to understand the human condition: how our identities are formed, how we interact with others, how people perceive each other. I study the human in its more tactile dimensions – the skeletal remains of the human body – but I still find myself asking the same questions. Why do we think the way we do? How do we move through our world and interact with others and our environment? I use individuals as case studies, partly because in the fields of bioarchaeology and archaeology skeletal remains have historically been relegated to appendices, but also because large numbers of individuals are typically analyzed statistically, disregarding the outliers. I want to understand and elevate the outliers. How did they live? What were their experiences? What makes them statistical outliers in their social and temporal context? Case studies, no matter the discipline, can restore the humanity of a single individual, highlighting how we are all unique and have fascinating stories to tell.    

[1] Bioarchaeology is multidisciplinary in nature, contextualizing human osteology with archaeological and mortuary evidence to address questions of behavior, social organization, activities, paleodemography, mobility, diet, and disease (Buikstra, 1977). Paleopathologists study individuals from historical or prehistorical contexts with skeletal evidence of disease. Return to the text.