As most rare disease patients will tell you, health care can involve a lot more than treatment. In fact, for a lot of us, the journey to treatment is long and treacherous. For me, that journey began with a giant turkey-shaped rash at summer camp in 2007. What I didn’t learn for another 11 years is that the rash was something called a “mast cell attack,” which is basically massive hives that develop without any obvious contact with a specific allergen. I’d been living with chronic illness since age 14, I just hadn’t discovered the extent of my co-morbidities. It took another year of aggressively pursuing a physician to explore a set of diagnoses that I only discovered because of an extremely brave first-year neurology resident.
My initial interest in research was sparked by my own difficulties with Juvenile Idiopathic Arthritis (JIA) treatment, which, in hindsight, make a lot more sense than they did as a 20-year-old undergraduate student. With my new diagnoses also came more visibility than I had ever experienced, and a variety of pink mobility aids. This was expected, but what I [should have but] did not anticipate was the pushback I received as a disabled person when speaking to my own experiences with disability and chronic illness. Particularly interesting? Health care professionals questioning the validity of my diagnoses because they fall into the “rare disease” category. The disabled community is extremely active online, and as a member of this community, I’ve grown to understand some of my diagnoses as “rarely diagnosed,” but not necessarily rare in the population.
As a medical sociologist, I’ve also seen how the exclusion of people with certain diagnoses from discussions relating to disability and health care has contributed to widespread misunderstanding of a growing segment of the disabled community among experts, not just within medicine, but also in tangentially related fields. My research interests have slowly shifted away from issues with treatment effectiveness towards issues with the social construction of “expert” knowledge and broader issues of disability justice.
My current research projects include collaborative investigations of suicidal intent among college students and, separately, hashtag-driven conflict between the disabled community and health care professionals on Twitter. In my dissertation research, I investigate the ideological sentiments surrounding risk-mitigating health behaviors in Tweets posted during the first 19-months of the COVID-19 pandemic, for example, wearing masks, getting vaccinated, social distancing, and quarantine. The disabled community uses the slogan, “nothing about us without us,” to argue for our right to speak as experts about our own experiences as disabled. My goal as a disabled researcher is to center disabled people and our experiences, and to secure recognition for experience-based expertise alongside credentialed expertise in sociological research on disability.
Active Courses Spring 2022:
- Medical Sociology
- Sociology of Alcohol and Drug Use
Heather Sue is a doctoral candidate in the Department of Sociology at the University of Georgia. She earned her bachelor’s degree in Sociology at Auburn University in 2011, with minors in French Language and History (sp. Civil Rights Movements in the United States). She received her Master’s degree in Sociology at the University of Georgia in 2018.
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