Description:

Scrutinizing Ashley X

At the end of 2006 Daniel Gunther and Douglas Diekema published “Attenuating Growth in Children with Profound Developmental Disability: A New Approach to an Old Dilemma” in the Archives of Pediatric and Adolescent Medicine that caused a storm of controversy. Ill prepared for the national spotlight and intense media interest, Ashley X’s parents complicated matters in January of 2007 by posting a blog about their daughter and children like her deemed “pillow angels”. Predictably, disability rights scholars, disability activists, and those who work directly with children and adults with profound cognitive and physical disabilities were outraged. Diekema, Seattle Children’s hospital and Ashley’s parents were stunned at the fierce reaction. Lost in the heated polemical exchanges between those for and those against growth attenuation were the personal narratives of parents and care givers responsible for the day to day care of children and adults who were entirely dependent upon others. Unfortunately, Ashley’s parents’ narrative viewpoint was the only one considered in relation to growth attenuation. I maintain the medical and academic community consider the perspectives of other parents similarly involved in the care of an individual with severe disabilities, many of whom find the Ashley Treatment to be abhorrent and Ashley’s parents be misguided. These alternative life narratives present a powerful counterpoint to the detached dialogues of “experts” and provide a stinging indictment about the way we treat people with severe disabilities.

William J. Peace earned his PhD with distinction in anthropology from Columbia University circa 1992. Peace's research interests include the history of anthropology, disability studies, body art and modification, and bioethics. Peace is an engaged scholar who combines scholarship with advocacy for disability rights. He is an outspoken critic of assisted suicide legislation and board member of the grass roots organization Not Dead Yet.