Accounting for the Experiences of People with Down Syndrome in Clinical Settings

What can the discipline of medical anthropology learn about illness experience and the illness narrative, healing, the clinical encounter, health rights, the social determinants of health, racial inequities in medicine, health as a human right, forms of care, and health justice when we include the perspectives of those with intellectual disabilities in our analysis? Quite a lot, as I argue in this dissertation. Broadly, this dissertation is oriented around an experience-near, existential anthropology that focuses on how individuals experience and negotiate their immediate lifeworlds and relationships in the midst of historical and contemporary structures of inequity. Drawing on the anthropology of moral and ethical experience, the present research departs from the premise that individuals with Down syndrome are capable of conveying their values, opinions, experiences, and sense of what constitutes a good life and that it is possible to use the tools of ethnography to explore such commitments and values. In the first chapter, “Assuming Capacity: Ethical Participatory Research with Adolescents and Adults with Down Syndrome,” I detail my research methods and simultaneously make an argument for adapting ethnographic methods using the lens of feminist care ethics. In the second chapter, “‘People with Down syndrome, it’s hard to speak our mind’: Imagining Mental Health and Intellectual Disability,” I focus on the lived experience of adults with Down syndrome as they navigate mental health systems and experiences of mental illness. In the third chapter I begin to move outside the clinic and into the broader social and political worlds of participants with Down syndrome and their families. In “The Bureaucratization of Rights, Intellectual Disability, and The Good Life” I argue that human rights discourse in group homes and day programs strips human rights with their potential for justice and instead transforms them into a bureaucratized set of rules and regulations that call on clients and residents with Down syndrome to adopt a neoliberal subjectivity. In the fourth and final chapter I identify and compare different forms of care that I encountered in my fieldwork: research as care, failed care, and disability justice as care. In all, I document how people with Down syndrome pursue what they consider a good life amidst inequitable social structures