Publications
(* Denotes equal authorship.)
(** Denotes student author.)
If unable to access, please Email me for copies of the PDFs.
Tan, Catherine. 2024. Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge. Columbia University Press.
How are controversial beliefs empowered? How do they persist? Spaces on the Spectrum: How Autism Movements Resist Experts and Create Knowledge investigates two movements that resist experts, taking issue with dominant understandings of Autism Spectrum Disorder, a developmental disability. I argue that social movements are important spaces for the cultivation of “contentious knowledge”—or knowledge that aims to challenge expert authority and orthodoxy. This study draws from over three years of ethnographic fieldwork and interviews with members of the autistic rights and alternative biomedical movements. These two movements reimagine autism in different and conflicting ways: as a difference to be accepted, as a sickness to treat. The autistic rights movement is composed primarily of autistic adults who contend that autism is a natural human variation, as opposed to a disorder; accordingly, they demand social and cultural acceptance. Focusing on structural barriers, autistic rights activists advocate for policy changes that would expand the rights and inclusion of autistic people. The alternative biomedical movement, in contrast, includes parents and practitioners who believe in a disproven idea: that vaccines “trigger” autism. Believing in environmental and vaccine “injury”, they argue that autism can be “reversed” with alternative and experimental treatments. Both movements position themselves in opposition to researchers, professionals, and parents outside their communities. In this study, I examine their separate struggles to gain legitimacy and efforts to transform their beliefs into lived realities.
Kaufman, Eli J.** and Catherine Tan. 2022. “White as milk: Biocentric bias in the framing of lactose intolerance and lactase persistence.” Sociology of Health & Illness. (Published Online First August 26, 2022)
The majority of the world population is lactose intolerant, as 65%–70% of people lose the enzymes to digest lactose after infancy. Yet, in the United States, where lactose intolerance is predicted to affect only 36% of people, this phenomenon is often framed as a deficiency as opposed to the norm. This is because the United States has a higher prevalence of people who are lactase persistent. Lactase persistence is a genetic trait most common among Europeans and some African, Middle Eastern and southern Asian groups with a history of animal domestication and milk consumption. In this study, we take the case of lactose intolerance to examine how popular media maintains biocentric biases. Analysing relevant articles published in The New York Times and Scientific American between 1971 and 2020, we document how ideas about milk, health and race evolve over time. Over this fifty-year period, writers shifted from framing lactose intolerance as racial difference to lactase persistence as evolutionary genetics. Yet, articles on the osteoporosis ‘epidemic’ and vitamin D deficiency worked to perpetuate lactose intolerance as a health concern and standardise the dairy-heavy American diet. Studying media portrayals of lactose intolerance and lactase persistence, we argue that popular discourses normalise biocentric biases through messages about eating behaviours and health.
Tan, Catherine* and Umamaheswar, Janani. 2021. “Structural racism and the experience of tightness during the COVID-19 pandemic.”Ethnic and Racial Studies. (Published online first August 12, 2021)
Research has established the disproportionate impact of COVID-19 on communities of color. Drawing on three waves of in-depth interviews with 36 college students (for a total of 94 interviews), we extend the conceptual metaphor of “tightness” (derived from the sociology of punishment) to understand the experiential dimensions of structural racism in America, especially during periods of crisis. We argue that tightness intensified for Black and Latinx participants as they struggled to cope with the loss of loved ones, fears surrounding their own health, financial challenges, and concerns about police surveillance. We also find that the demonstrations following the killing of George Floyd represented a brief release from the suffocating tightness that Black participants experienced during the pandemic. Using the tightness metaphor to capture the compounding hardships endured by vulnerable populations, we build on existing research that has largely focused on isolated measures of harms associated with the pandemic.
Tan, Catherine. 2021. “defending snake oil: the preservation of contentious knowledge and practices.” Social Studies of Science.51(4) 538–56.
How does belief in controversial or disproven ideas persist? I study a community of parents and practitioners who challenge medical professionals to contend that Autism Spectrum Disorder is caused by harmful environmental exposures—notably, early childhood vaccinations—and can be “recovered” with alternative/experimental treatments. Despite objections from dominant experts, how do these actors protect their disputed ideas? This study identifies a set of strategies that help maintain internal legitimacy. Analyzing data from two years of ethnographic observations (at conferences and private medical practices) and thirty-one interviews, I observe that actors protect internal legitimacy through professional alignment and contrastive boundary work. Professional alignment mobilizes resemblances to conventional counterparts (i.e., mainstream doctors) to defend unorthodox practices. Meanwhile, contrastive boundary-work performances convey the defining values and strengths that actors associate with their knowledge community and concomitantly, the weaknesses they ascribe to competing groups. Through these activities, actors respond to perceived threats and construct a distinct group identity anchored in shared knowledge, ways of knowing, and practice.
Umamaheswar, Janani & Catherine Tan*. 2020. “"Dad, wash your hands”: Gender, care work, and attitudes toward risk during the COVID-19 Pandemic.” Socius: Sociological Research for a Dynamic World.6: 1-14
Recent analyses of responses to COVID-19 have posited that men’s dismissive attitudes toward the risks of the virus reflect their attempts to conform to masculine norms that valorize bravery and strength. In this article, we develop an alternative account of the gender differences in attitudes toward COVID-19. Drawing on 3 waves of in-depth interviews with 45 college students (including members of their household, where possible) over a period of 16 weeks (for a total of 120 interviews), we find that men and women in comparable circumstances perceive similar risks of COVID-19, but they diverge in their attitudes toward, and responses to, these risks. Connecting scholarship on gender and care work with research on risk, we argue that gender differences in attitudes toward risk are influenced by the unique and strenuous care work responsibilities generated by the COVID-19 pandemic, which are borne primarily by women—and from which men are exempt.
Tan, C.D. 2018. "I'm a normal autistic person, not an abnormal neurotypical": Autism Spectrum Disorder diagnosis as biographical illumination. Social Science & Medicine. 197: 161-167.
Building on Michael Bury's "biographical disruption" and Kathy Charmaz's "loss of self," which describe the deteriorative impacts of chronic illness on perceptions of selfhood, I propose "biographical illumination"-a transformed conceptualization of self and identity that is facilitated by but extends beyond medical meaning, enriching personal biography and social relationships. The concept is perhaps most applicable to experiences with neurological and neurodevelopmental conditions in which brain difference and personhood are perceived to be closely intertwined. In this study, biographical illumination is used to describe the experiences of autistic adults who learned of their Autism Spectrum Disorder (ASD) diagnosis during teen years or adulthood. Through an ASD lens, participants found explanation for their atypicality and developed a more valued self-concept. Learning of the condition did not disrupt their biography; rather, it became integral to and constitutive of it. With a new self-concept, participants re-gauged personal expectations for normalization and accessed communities of alike others, forging relationships that affirmed identity.
Senier, Laura, Catherine Tan, Leandra Smollin, and Rachael Lee. 2018. “Understanding the potential of state-based public health genomics programs to mitigate disparities in access to clinical genetic services.” Genetics in medicine. 21: 373-381.
State health agencies (SHAs) have developed public health genomics (PHG) programs that play an instrumental role in advancing precision public health, but there is limited research on their approaches. This study examines how PHG programs attempt to mitigate or forestall health disparities and inequities in the utilization of genomic medicine. We compared PHG programs in three states: Connecticut, Michigan, and Utah. We analyzed 85 in-depth interviews with SHA internal and external collaborators and program documents. We employed a qualitative coding process to capture themes relating to health disparities and inequities. Each SHA implemented population-level approaches to identify individuals who carry genetic variants that increase risk of hereditary cancers. However, each SHA developed a unique strategy—which we label public health action repertoires—to reach specific subgroups who faced barriers in accessing genetic services. These strategies varied across states given demographics of the state population, state-level partnerships, and availability of healthcare services. Our findings illustrate the imperative of tailoring PHG programs to local demographic characteristics and existing community resources. Furthermore, our study highlights how integrating genomics into precision public health will require multilevel, multisector collaboration to optimize efficacy and equity.
Senier, Laura, Leandra Smollin, Rachael Lee, Lauren Nicoll, Michael Shields, and Catherine Tan. 2018. “Navigating the Evidentiary turn in public health: sensemaking strategies to integrate genomics into state-level chronic disease prevention programs.” social science & Medicine. 211: 207-215.
In the past decade, healthcare delivery has faced two major disruptions: the mapping of the human genome and the rise of evidence-based practice. Sociologists have documented the paradigmatic shift towards evidence-based practice in medicine, but have yet to examine its effect on other health professions or the broader healthcare arena. This article shows how evidence-based practice is transforming public health in the United States. We present an in-depth qualitative analysis of interview, ethnographic, and archival data to show how Michigan's state public health agency has navigated the turn to evidence-based practice, as they have integrated scientific advances in genomics into their chronic disease prevention programming. Drawing on organizational theory, we demonstrate how they managed ambiguity through a combination of sensegiving and sensemaking activities. Specifically, they linked novel developments in genomics to a long-accepted public health planning model, the Core Public Health Functions. This made cutting edge advances in genomics more familiar to their peers in the state health agency. They also marshaled state-specific surveillance data to illustrate the public health burden of hereditary cancers in Michigan, and to make expert panel recommendations for genetic screening more locally relevant. Finally, they mobilized expertise to help their internal colleagues and external partners modernize conventional public health activities in chronic disease prevention. Our findings show that tools and concepts from organizational sociology can help medical sociologists understand how evidence-based practice is shaping institutions and interprofessional relations in the healthcare arena.
Tan, Catherine and Gil Eyal. 2014. “Two Opposite Ends of the World: The Shaping of Pedagogical Action in an Autism-Only School.” Journal of Contemporary Ethnography 44 (1): 34-62.
How do individuals maintain a sense of efficacy and purpose in the face of high levels of ambiguity and uncertainty? In research on medical uncertainty, sociologists often discuss the strategies health practitioners employ to control uncertainties relating to diagnosis and treatment. Over six months of ethnographic field work at an autism-only therapy school, we observed seventy-five students and forty-seven instructors and formally interviewed ten instructors and four parents. While other studies on medical uncertainty have focused on controls over external circumstances, we demonstrate that another management strategy is for individuals to perform ethical work on themselves in order to adjust how they conduct themselves in uncertain situations. Despite the ambiguity of both the autism diagnosis and the therapeutic method employed at the school, instructors are able to maintain a sense of efficacy and to recognize themselves as “doing floortime” by transforming themselves to become “child directed.”
