Disability and Mothering: Liminal Spaces of Embodied Knowledge

2. Negotiating Discourses of Maternal Responsibility, Disability, and Reprogenetics: The Role of Experiential Knowledge

34 2 Negotiating Discourses of Maternal Responsibility, Disability, and Reprogenetics The Role of Experiential Knowledge F e l i c i t y B oa r dm a n Women with disabilities have long experienced constraints on their reproductive choices and rights. For women with genetic disabilities, new technologies have increased these constraints. They, and their relatives , are compelled to consider explicitly the prospect of giving birth to, or terminating, a fetus identified as having the trait associated with their impairment, and they must negotiate powerful discourses of maternal responsibility and assumptions about life with disability to validate their reproductive choices. This chapter presents research on the way in which women with a specific heritable disability, spinal muscular atrophy (SMA), draw on their embodied knowledge of their disability to resist negative assumptions and to rewrite the discourses of maternal responsibility in reproductive decision making. I argue that experiential knowledge can be both empowering and transformative but can also introduce new forms of conflicting obligation to reproductive decisions for women with genetic disabilities. Historically, pregnant women were discouraged from having any contact with disabled people during the course of their pregnancies and even from thinking about disability lest their child be born impaired (Huet 1993, 457). In contrast, the availability of ultrasound and maternal serum alpha fetoprotein (MSAFP) screening as standard components of most forms of prenatal care, as well as testing for an ever-expanding number Negotiating Discourses of Maternal Responsibility • 35 of genetic conditions, suggest that nearly all pregnant women are now encouraged to consider the prospect of disability in their unborn child (Press et al. 1998, 48). These developments have been heralded as offering new forms of choice and control over reproduction, and even as making forms of reassurance available to pregnant women (Lippman, 1991, 22); however, they have also brought with them new forms of genetic responsibility (Kenan 1994, 57). The expectations, boundaries, and definitions of motherhood itself have shifted alongside the development of these technologies. The very availability of previously inaccessible knowledge concerning parents ’ genetic status and/or that of an unborn fetus may imbue a sense of responsibility not only to obtain this information in the first instance, but also to terminate those pregnancies genetically identified with a trait, which is assumed to be inherently negative and burdensome (Saxton, 1999, 26). Some writers have even suggested that these developments point to the prospect of women eventually being held accountable for their children ’s disabilities, as they come to be considered “preventable” on account of the very availability of such information (L. Rogers 1999, 28). While the development of these technologies introduces ethical, social, and moral considerations for all prospective mothers, for women with genetic disabilities considering reproduction these concerns take on particular forms and involve very specific tensions. Not only do women with genetic disabilities find themselves being labeled “irresponsible” for reproducing (on the basis of assumptions about their bodies and capabilities ), but the very availability and offer of genetic testing technologies also forces them to consider their own “genetic responsibility” (Kenan 1994, 57) toward any prospective child. Discourses of responsibility, therefore, may have particular consequences for women with genetic disabilities. I will examine how three women with the genetic disability SMA consider reproduction in the context of prenatal testing and preimplantation genetic diagnosis (PGD) and negotiate these discourses of responsibility. I argue that the women’s lived experiences of their impairments is an important discursive tool enabling them not only to deflect the perceived (and actual) judgments others make about their reproductive choices, but also to transform the boundaries and definitions of responsible motherhood itself. 36 • Felicity Boardman Women with Genetic Disabilities and Reproduction The systematic denial of reproductive rights to women with disabilities has a long history, including the widespread practice of coercive abortion , sterilization, and a generalized social resistance to their right to bear children (Kallianes and Rubenfeld 1997, 207). Women with disabilities are often perceived as asexual, as incapable of caring for a child, and are assumed to transmit their disability to their offspring automatically, regardless of its etiology, thus rendering them unsuitable mothers in the eyes of the general public. While there also exists resistance to disabled men taking on parenting roles, the implications of discourses of parental responsibility operate differently for men and women. Indeed, historically , women have been held solely responsible for pregnancy outcomes, as evidenced in theological and medical representations (Dragonas 2001, 138). The works...