UCLA Center for the Study of Women

My current work continues the study of stigma, medicine, and hereditary neurological and psychiatric Huntington’s disease that I began in 1995 "Mapping Fate: A Memoir of Family, Risk, and Genetic Research" (UC Press, 1995). But whereas Mapping Fate is autobiographical and contemporary, my most recent book, "The Woman who Walked into the Sea: Huntington’s and the Making of a Genetic Disease" takes a more historical approach. Published in 2008 by Yale University Press and awarded the American Medical Writers’ Book Award for 2008, this book traces the ways in which an unusual form of “St.Vitus’s dance” became Huntington’s chorea and movements and cognitive and emotional decline. In tracking these changes over the nineteenth and early twentieth and historical narratives of the disease made women a source and scapegoat for Huntington’s—although the disease affects males and females in equal HD families as undesirable citizens, thereby encouraging the family secrecy and denial that medicine ostensibly sought to overcome.