Abstract: I explore the ethics of altering the body of a child with severe cognitive disabilities in such a way that keeps the child ‘forever small.’ The parents of Ashley, a girl of six with severe cognitive and developmental disabilities, in collaboration with her physicians and the Hospital Ethics Committee, chose to administer growth hormones that would inhibit her growth. They also decided to remove her uterus and breast buds, assuring that she would not go through the discomfort of menstruation and would not grow breasts. In this way she would stay ‘forever small’ and be able to be carried and handled by family members. They claimed that doing this would ensure that she would be able to be part of the family and of family activities and to have familial care. But the procedure has raised thorny ethical questions. I wish to explore these questions philosophically by bringing to bear my own experiences as a mother of a grown daughter with severe cognitive impairments.
Comment: This reading both introduces the controversial case of Ashley X and also provides a set of ethical considerations concerning altering the bodies of persons with severe cognitive disabilities. It would serve as an excellent introduction to a unit on disability, a unit on the ethics of care, or concerning the limits of parental paternalism.