chapter  20
23 Pages

At the Same Time, Out of Time: Ashley X

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, policymakers, 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 growingapart fromhermind; physically, her body was developing rapidly, but mentally, her mind was failing to develop at all. As a result, she was embodied asynchrony; her mindandbodywereoutof sync.Byarresting the growth of Ashley’s body, the Treatment could stop this gap betweenmind 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 Ashley in time. Adding to the future framing of the case is the fact that both parents and doctors have offered the Treatment as a template for other children; they have expressed the hope that the Treatment will, in the future, become more widespread. The Ashley case, in other words, is shot through with temporal framings of the mind/body, especially the disabled mind/body, and with rhetoric about the future. Before examining the temporal framing

of the case, I will first present an overview of the Treatment and its legal aftermath, as well as a summary of how Ashley’s parents and doctors explain and justify the Treatment. The bulk of the chapter reads the case through a temporal framing, focusing on the ways in which Ashley was cast, and cast as, out of time; from the beginning of the case, she has been represented as temporally disjointed, as aneternal child, andas threatened by her future self. In addition, I explore the gendered dimensions and assumptions of the Treatment, detailing how Ashley’s femaleness, or future femaleness, renderedheratemporality particularly grotesque. As this story makes painfully clear, not all disability futures are desirable; in other words, the problem is not only the inclusion of disability in our futures but also the nature of that inclusion. I conclude the chapter, then, with a brief reflection about how to imagine desirably disabled futures.