Norman Cantor, author of Making Medical Decisions for the Profoundly Mentally Disabled, comments on the recent debate over the medical treatment of a 9-year-old girl named Ashley who is severely mentally and physically disabled:
Some disability rights advocates say that Ashley’s medical intervention violates “basic human rights.” I disagree. I argue (in Making Medical Decisions for the Profoundly Mentally Disabled, MIT Press, 2005) that every profoundly mentally incapacitated person has a right to have decisions about potentially beneficial medical interventions made by a conscientious surrogate acting with careful attention to the incapacitated person’s interests, well being, and dignity. Bodily integrity is normally part of human dignity, but there are circumstances when bodily invasions are justified by the patient’s own interests. For example, a therapeutic sterilization can be appropriate for a person whose bodily condition means that pregnancy and/or child birth would be torturous. The surrogate’s decision must be free of negative stereotypes and must include consideration of alternative ways, other than bodily intervention, to promote the person’s well being.
Ashley’s case seems to fulfill the criteria for humane treatment. Her parents have always been devoted to Ashley’s well being. They have consulted with medical experts and with a 40 person ethics committee. They have had considerable input from parents of similar children indicating that normal bodily development will result in a significantly diminished quality of life for Ashley. If, as claimed, Ashley could not enjoy the normal benefits of physical maturation, and if there are no less intrusive alternatives, her parents’ decisions about medical intervention do not violate Ashley’s rights.