Assuming Capacity
This chapter reports on the successful inclusion of adolescents and adults with Down syndrome (DS) in a long-term ethnographic research project focusing on the clinical, social, and familial experiences and explores how the voices and opinions of those with DS can be leveraged to shift existing policy conversations. The three key methodological interventions are: (1) adapted photovoice, (2) assisted interviewing, and (3) the employment of a research assistant who has DS. In addition to documenting the adaptation of research methodology to suit the needs of interlocutors with intellectual disabilities, a feminist care ethics lens is used to argue that social scientists ought to examine normative assumptions about personhood and narrative that underlie existing research methods. These methodological innovations are transferable to research participants with a wide range of intellectual disabilities and can aid in conducting ethical participatory research among people with cognitive differences.