Princeton, New Jersey
To conduct interviews with rare disease advocates, and to analyze the convergence of cultural, theological, and disability-related perspectives in rare disease advocacy in order to increase the full, conscious, active participation of people with rare disease in worship.
This project studies the impact of chronic illness, particularly long COVID, on Christians seeking connection in worshiping communities. The WHO asserts that long COVID causes fatigue, shortness of breath, and cognitive dysfunction, and affects 30-40 percent of COVID survivors. Due fluctuating, relapsing, and significant symptoms, long COVID falls within the definition of chronic illness. However, chronic illness, as human experience, lacks attention from practical theological, pastoral, and biblical disciplines. We will interview Christians living with chronic illness, half among with long COVID, in order to understand and assess persistent and novel challenges and insights posed by these experiences to Christian worshipping communities.
What questions about worship and your discipline will be guiding your project?
- What kind of access to worship did people living with chronic illness experience prior to the COVID-19 pandemic?
- What kind of access to worship did people living with chronic illness experience during the COVID-19 pandemic?
- What kinds of access to worship do people living with chronic illness currently experience?
- What operative theologies and cultural metaphors do people living with chronic illness use to make sense of their experiences?
- What operative theologies and cultural metaphors do people living with long COVID use to make sense of their experiences?
- What experiences of church have been accessible and meaningful to persons living with chronic illness?
- What insights do persons living with chronic illness/long COVID have for worshipping communities, Biblical interpretation, and practical theology?
How do you envision this project will strengthen the worship life of congregations?
Gathering data on the experiences of people with chronic illness and their reflections on illness, faith, and worship will help congregations better understand their circumstances, how to minister to them, support them, and pursue justice alongside them. Some people with chronic illness hold a medical model of disease, focusing on the relationship between treatments and improved quality of life. Others find reassurance in a social model of disability that affirms the social injustice of lack of access and accommodations for supporting disabled lives. Both mental and physical challenges associated with onset of long COVID raises issues of grief and suffering to which the church must be prepared to speak. From practical, pastoral, and theological vantages, these are perspectives congregations must take seriously as they minister to aging and disabled populations in a post-pandemic world.
What do you expect might be your greatest challenges (or challenging opportunities)?
My research assistant and I identify as people with disabilities or chronic illnesses, which offers us empathy and insight into this work. Yet, it also intensifies the stakes, because these topics are not just research, they are personal and emotional for us. We are going to need to continually reassess our reflexivity as researchers so that we can be open to the contributions and insights of our research participants. Second, as worshiping communities move to mask optional, many people with chronic illness have been hurt by the church. Already feeling like we’re at an impasse with the lack of understanding between people with chronic illness and worshiping communities is daunting. Finally, trying to study a phenomenon like long COVID, which is still very much emerging, amidst a pandemic, which is still very present, makes it difficult to gain historical perspective on our research.
What do you hope to learn from the Grants Event and other grant recipients?
We’re still completing our literature review, so we would love suggestions from folks regarding reading resources regarding biblical studies, practical theology, pastoral theology, and chronic illness. We are also still conceiving of our research design and our research questions, so we would love to discuss and gain feedback on the methods with fellow researchers. We’re interested in whether other projects are studying the pandemic and its effects and how we can learn from other approaches to worship within this shared context. Finally, we would love to learn of potential interviewees, especially from a variety of worshiping contexts from other folks present at the event.