Paper Short Abstract:

Since prenatal screening was integrated into the Swedish maternity care program, many have come to see it as a natural part of pregnancy, and while strictly voluntary, to decline is unusual. However, for those who do decline screening, their refusal challenges biomedical narratives of disability as fundamentally negative and as meant to be overcome.

Paper Abstract:

Since being added to the national maternity care program in the early 2000’s, prenatal screening has become available to most expecting parents in Sweden, informing them of the likelihood of their expected child having a congenital impairment. As noted by scholars on disability such as Alison Kafer, the medical model has long presented disability as inherently tragic – as something to be mourned if not cured or overcome. Thus, under the current biomedical narrative, refusing prenatal testing would seem like jeopardizing the happiness of your future child. Indeed, while screening is voluntary, declining the offer is uncommon and many expecting parents in Sweden see screening as a given part of pregnancy. Under such circumstances, what does it mean to refuse screening?

In this paper, I present material from interviews with parents who have declined the general offer of prenatal screening and argue that such a refusal challenges longstanding biomedical narratives of disability as fundamentally negative. While biomedicine frequently presents it in terms of deficiency, these parents instead draw on lived experiences of disability to insist on disability as a natural aspect of human diversity, and on disabled lives as worth living. By refusing to see disability mainly as a clinical issue affecting individual families, instead emphasizing its social aspects, they frame disability as a political issue, calling on the state to take responsibility for the care of all citizens, rather than handing the issue over to individual parents-to-be. Thus, through refusing prenatal screening, these parents unwrite biomedical narratives on disability.