Feminist, Queer, Crip

2: At the Same Time, Out of Time: Ashley X

47 2 At the Same Time, Out of Time Ashley X The stories of women with disabilities must be told, not as stories of vulnerability, but as stories of injustice. —Sherene Razack, “From Pity to Respect” In thinking about crip futurity, I find myself haunted by Ashley X. Born in 1997, the girl known as Ashley X was diagnosed with “static encephalopathy” a few months after her birth. “In the ensuing years,” doctors note, “her development never progressed beyond that of an infant,” and her doctors held no hope that her cognitive or neurological baseline would improve.1 “At the age of 6 years, she [could] not sit up, ambulate, or use language.”2 Concerned about their daughter’s long-term future, Ashley’s parents met with doctors in 2004 to discuss the potential effects of puberty and physical growth on their ability to care for her at home. Together they crafted a two-pronged plan: “attenuate” Ashley’s growth by starting her on a high-dose estrogen regimen; and, prior to the estrogen treatment, remove Ashley’s uterus and breast buds in order “to reduce the complications of puberty” and mitigate potential side effects of the estrogen treatment.3 According to her parents and doctors, these interventions were necessary for Ashley’s future quality of life: they would reduce her pain and discomfort (by removing the possibility of her menstruating or developing breasts) and would enable her parents to continue caring for her at home (by keeping her small enough to turn and lift easily). Her parents worried that, without the Treatment, Ashley would become too cumbersome for them to lift safely, and, as a result, her participation in social and recreational activities would decrease dramatically.4 Ashley’s doctors took this concern a step further, expressing fear that caring for her at home might eventually become “untenable” and that Ashley’s parents would need to place her “in the hands of strangers.”5 48 | At the Same Time, Out of Time From the moment this case became public, in late 2006, it has garnered widespread attention. Both Ashley’s doctors and Ashley’s parents have written extensively about the case, carefully articulating their respective positions on the appropriateness of the Treatment. Bioethicists, disability rights activists, pediatric specialists, parents of disabled children, policy makers, disability studies scholars, legal experts, bloggers, and journalists have joined the fray, debating the ramifications of this case in particular and of growth attenuation/sterilization in general.6 Critics of the Treatment have condemned the hospital for violating sterilization regulations, challenged the parents’ presumption that they know what is best for their daughter, and debated the appropriateness of reshaping children’s bodies without their consent. Supporters of the Treatment have stressed the difficulties of parenting severely disabled children, the noble intentions of the parents, and the alleged benefits of growth attenuation and sterilization. Rather than rehash that work here, parsing the legalities of the case or determining the proper decision-making authority or debating the moral permissibility of surgically shaping children, I want to take a different tack, rereading Ashley’s case through the lens of time and futurity. As becomes clear in both parental and medical justifications of the Treatment, the case of Ashley X offers a stark illustration of how disability is often understood as a kind of disruption in the temporal field.7 Supporters of the Treatment frame Ashley ’s disability as a kind of temporal disjuncture; not only had she failed to grow and develop “normally,” but her mind and body were developing at different speeds from each other. According to this logic, Ashley’s body required intervention because her body was growing apart from her mind; physically, her body was developing rapidly, but mentally, her mind was failing to develop at all. As a result, she was embodied asynchrony; her mind and body were out of sync. By arresting the growth of Ashley ’s body, the Treatment could stop this gap between mind and body from growing any wider. In order to make this argument, Ashley’s parents and doctors had to hold her future body—her imagined future body—against her, using it as a justification for the Treatment. Without intervention, the asynchrony between mind and body would only grow wider; Ashley’s body would become more and more unbearable to her, to her parents, and to those encountering her in public. This future burden, brought on by the future Ashley, could only be avoided by arresting the present...