The “Promise” of Prevention: Motherhood, Cognitive Disability, and Genetics

In the mid-twentieth century, Americans with cognitive disabilities embodied an image of dependence seemingly incompatible with gendered ideas of citizenship. To have a child with a cognitive disability, or to be disabled oneself, placed one outside a society that, as historians such as Elaine Tyler May and Carolyn Herbst Lewis have described, idealized middle class, heterosexual families. In this way, the mid-twentieth century has a lot in common with prior decades. But few scholars have yet to explore how changing understandings of disability during this period, which saw the expansion of both genetic science and disability advocacy, affected these gendered expectations of family formation, both for people with disabilities and parents of children with disabilities. My paper explores these shifts with special attention to Down syndrome and the relationship between prevention and acceptance of disability. I explore what implications genetics had for the ways scientists and everyday Americans defined disability, and in what ways disability shaped expectations of who was (and wasn't) an appropriate parent. I argue that geneticists and genetic counselors helped to remove some of the stigma from parents of children with disabilities at the same time they held out the "promise" of preventing those disabilities in the first place, and that these efforts resonated with parent groups for whom advocacy and prevention were often two sides of the same coin. Using a range of sources from science journals, to disabled women's memoir, to genetic counseling case histories, I trace the ways genetic science and parent activism reshaped medical and social understandings of cognitive disability in the mid-twentieth century. This project, by examining how social expectations related to disability, responsible parenthood, and citizenship intersected with genetic counseling and prenatal testing, highlights the instability of seemingly distinct boundaries between public and private, autonomous and prescriptive, and normal and abnormal.