Paper short abstract:

This paper considers the complicities of kinship and complexities of participation that shape ethnographic research. To do so, I reflect on the choices and constraints that informed my research focus on parents raising children with Down syndrome in urban Jordan.

Paper long abstract:

This paper considers the complicities of kinship and complexities of participation that shape ethnographic research. To do so, I reflect on the choices and constraints that informed my decision to focus on parents raising children with Down syndrome in urban Jordan. While I spent considerable time learning from children and adults with Down syndrome during my fieldwork, they figure into my writing primarily through the filtered lenses of parents and the ethnographer herself, rather than as active ethnographic interlocutors. My methodologies reproduced power asymmetries that are explicitly problematized by critical disability studies scholars and disability anthropologists, who have cogently argued that a focus on parents and caregivers too often effaces intellectually and developmentally disabled persons as agents and subjects. Yet beyond the concerns of institutional review boards (which themselves merit critical consideration), we are also accountable to our interlocutors’ relational perceptions of risk, harm, and appropriateness. While there are many promising and successful interventions that qualitative researchers can employ to include intellectually and developmentally disabled persons in research, their applications remain context and even individually specific. In grappling with the problem(s) of complicity, I consider both the parental practices of protection and surveillance that I encountered, as well as the affordances and constraints of my own positionality. I critically reassess some of my original methodological assumptions and their consequences while also asking whether some forms of failure – or uncomfortable complicity, to say the least – may be embedded in ethnographic methods.