Ashley is young woman who was born in 1997 with a severe mental and physical disability that prevented her from ever eating, walking or talking by herself. Her mental capacity was also not expected to develop further than that of an infant. In 2004, When she was six and a half years old, Ashley‘s parents and the Seattle Children’s hospital physicians who had been treating her sought to perform on Ashley a novel medical intervention that would include hormonal treatment for growth attenuation, surgical removal of her breast buds, and a hysterectomy. This surgical intervention was presented as beneficial to Ashley by allowing her parents to take care of her longer and postpone institutionalization. The removal of breast buds and hysterectomy were meant to spare Ashley the pain and discomfort of menstruation and the development of fully-developed breasts, and also to “avoid sexualization” in order to make her less vulnerable to sexual abuse when she was ultimately institutionalized.
Here is a slide, apparently made by Ashley’s father, which explains the theory behind the treatment:
Among the dozens of issues this controversial treatment raised was the lack of a court order authorizing the treatment. According to the investigative report conducted by the Washington Protection & Advocacy System (WPAS), the planned intervention was brought before an ethics committee, which approved it but nevertheless advised the family to seek court approval for the hysterectomy. According to the report, Ashley’s parents didn’t seek court approval but rather consulted with their attorney who advised them that, according to Washington state law, court approval is not needed for the sterilization of minor patients with developmental disabilities when sterilization is not the “sole purpose” of the procedure. This position was accepted by the children’s hospital, which went ahead with the treatment, but later expressed regret.
The question in which I’m interested is why a court review is required only for the sterilization component of the “Ashley treatment,” as it has come to be known, but not for the general growth attenuation and the de-sexualization aspects. Here are some of my preliminary thoughts:
The legal protection against involuntary sterilization was developed through the constitutional protection on liberty and privacy in the Fourteenth Amendment.[1] As for the specific context of medical decision-making for minors, the departure point is the strong protection over family privacy allowing parents almost full capacity to make decisions on behalf of their minor children. Washington state law generally limits parental authority by a court review for highly invasive and irreversible treatments.[2] Sterilization has been recognized to require a separate representation of the minor patient by a third party in an adversary hearing (guardian ad litem).[3]
Legal protection against forced sterilization is bound with American engagement with eugenics laws, which prevailed in the first half of the 20th century and were disaffirmed gradually by the states in the second half of the century. However, developments in endocrinology and surgery over the past several of decades have generated an array of medical interventions for children that are highly similar in their invasiveness and irreversibility to sterilization. In fact, combinations of hormonal and surgical interventions are already used to control and manipulate different aspects of children’s sexuality, not just in cases of intersex infants and Trans youths, but also in Ashley’s case – by keeping her child-like. It appears that, currently, only procreation is a protected liberty interest, yet sex selection, change, and attenuation, are fair game for parents and physicians.
I am not arguing that these types of intervention necessarily impose upon a minor patient’s liberty interests, but rather wonder: was Ashley’s liberty interest preserved under this model? It may very well be that due to her severe disability even a court review looking more closely at the issue would have come to the same result and approved the hysterectomy. However, what about her de-sexualization? I do not think that the removal of breast buds or a uterus (or any other human organ for that matter) is in fact de-sexualizing. I do believe, though, that the endeavor to infantilize her physically may have prevented the opportunity to explore her growing body and sensory tissues that come with it. It may be that one of Ashley’s liberty interests was vested in the potential pleasure from her developing body. Ashley’s case is extremely rare and unique, yet it invites us to revisit our attitudes towards children’s sexuality in light of new scientific innovations, and ask whether their liberty interests in their bodies spread beyond procreation.
(I want to thank Lihi Yona for her helpful remarks).
[1] Skinner v. Oklahoma, 316 U.S. 535, 541 (1942).
[2] See references in the WPAS investigative report (p.17).
[3] Hayes, 93 Wn.2d 228 (1980).
