Revisiting Ashley X: An Essay on Disabled Bodily Integrity, Sexuality, Dignity, and Family Caregiving

Abstract

This Essay looks back on controversial medical procedures performed on a young girl in Seattle over a period of several years. Ashley X, deemed by her family one of the “Pillow Angels,” has significant intellectual and mobility disabilities. She was given high dose estrogen treatment to attenuate her growth, a mastectomy to protect her from sexual assault and from the discomfort and sexualization of large breasts, and a hysterectomy to prevent menstruation and pregnancy: these interventions were also intended to make her more easily manageable by family members and caregivers so that she would be more able to be included in family life. Since the case became public, more children, both girls and boys, in the United States and around the world have undergone similar protocols. The passage of time, intervening changes in the legal landscape, and Ashley’s transition to adulthood prompt us to ask questions about how parents and healthcare providers can make better decisions for children with disabilities without altering their bodies or their sexuality or reproductive capacity. Without castigating Ashley’s family for their decision or rehashing the ethical and other arguments that have been made, we explore, from a family support and human rights perspective, alternatives to invasive procedures that maintain personal integrity and preserve dignity while also offering day-to-day assistance.

Keywords: Growth Attenuation, Bodily Integrity, Legal Capacity, Dignity, Sexual Capability, Sexual Liberty Interest, Developmental Disability, Cognitive Disability, Community Support, Supported Decision-Making

JEL Classification: I18, I19, K39