I am currently finishing my dissertation, “Beyond Mystery Babies: Disability, Family, and Diagnostic Journeys,” which examines how shifting understandings of disability unfold in everyday life. In particular, my work focuses on rare and undiagnosed disabilities. People are often shock when I tell them that up to 40% of children with disabilities in U.S. are undiagnosed. What does this mean in an age of broadening diagnoses, increased attention to disability rights, digital platforms for online disability advocacy, and diagnostic innovations?
My dissertation focuses on rare and undiagnosed disabilities in families’ everyday lives. I conducted research at diverse sites and interviewed a wide variety of people in the worlds of advocacy, activism, family leadership, medicine, genetics, law, policy, and the arts. I am continuously pulled in by the connections between these domains and by the way that disability often silently lingers just below the surface.
As an anthropologist, I aim to use my training and background to produce studies that are useful for both academic and public audiences, including researchers, parents, family members, caregivers, and professionals.
My work has been supported by the Wenner-Gren Foundation, Tinker Foundation, and a Named/Endowed Continuing Fellowship from the University of Texas.