Ashley X: Background information when reading Far From the Tree

Ashley X

This article relates to Far From the Tree

One of the stories Solomon tells in Far From The Tree is about Ashley X (the last name is to protect identity), a disabled girl whose story generated a lot of controversy about disability and its treatment.

Ashley X, born in 1997, was diagnosed in infancy with static encephalopathy, a brain disorder that is similar to cerebral palsy. Ashley was labeled "Permanently Unabled," which means that she would remain at infant level, mentally and physically, for the duration of her life. Ashley cannot walk, talk, feed herself, raise her head, or turn over. She can sleep, she can wake, she can breathe, and she can smile. Ashley's parents call her their "Pillow Angel," and dedicate the majority of their days to caring for her in every way - tube-feeding, changing, bathing, dressing, positioning and entertaining.

When Ashley was six, she started showing signs of precocious puberty, which is common in children with brain damage. Her parents worried about both her growth and the pain and discomfort menstruation and bodily maturation would cause. Her parents feared what would happen when Ashley began to menstruate, and also about the discomfort that large breasts would cause her. After researching hormone therapy options to stunt growth, an endocrinologist, Dr. Daniel Gunther at Seattle Children's Hospital, was consulted. He and Ashley's parents decided that the best course of action, to make Ashley's life as pain-free as possible, was to stunt her growth with estrogen, and perform a hysterectomy and breast removal as well.

The hospital's ethics committee considered the case on two grounds: a) Would these procedures have the potential to improve Ashley's quality of life? And b) What would the potential for harm be, and would it be so much that even with the potential benefit, it should be avoided? The committee voted to grant the procedures, and in 2004, Ashley X underwent a hysterectomy and had her breast buds removed. The set of procedures to suppress growth and sexual maturation were together called, "The Ashley Treatment."

The doctors and Ashley's parents were thrilled with the results and believed they'd made the right decision. Not much later, however, a report appeared in the Archives of Pediatrics & Adolescent Medicine detailing the procedure, and a storm of controversy ensued. Critics of the procedure were very vocal: Bioethicists claimed it was a failure of society to provide adequate support services, feminists accused the doctors of sexual mutilation, and even some disability advocates were outraged. They believed that Ashley's parents had been thinking only of themselves when they decided to stunt her growth, that if she were to stay small, she would be easier to manage.

However, an overwhelming majority of the public reaction was in support of Ashley's parents. Princeton bioethicist Peter Singer spoke out, stating, "What matters in Ashley's life is that she should not suffer, and that she should be able to enjoy whatever she is capable of enjoying. Beyond that, she is precious not so much for what she is, but because her parents and siblings love and care about her. Lofty talk about human dignity should not stand in the way of children like her getting the treatment that is best both for them and their families."

In 2007, Ashley's parents reported on their blog: "...the overwhelming majority of those who took the time to visit Ashley's blog (the only way to obtain our email address) and see her photos were in support. More importantly, virtually all family members and caregivers who indicated a direct experience with Pillow Angels were in support of the treatment."

In a March 2012 interview with the Guardian newspaper, Ashley's father reported that at age 14, she was 54 inches and weighed 75 pounds. The interview stated that her height and weight were that of a nine-year-old, the age she was when she received the Ashley treatment. Ashley lives at home with her siblings and parents, who maintain a blog about her and the effects of the Ashley Treatment. They are in contact with about a dozen parents from around the world who have chosen to have this procedure performed on their "pillow angels," and remain active in the national conversation about disability rights and medical intervention for the disabled.

To learn more about other families and exceptional children portrayed in Far From the Tree, click here.

Filed under Society and Politics

This "beyond the book article" relates to Far From the Tree. It originally ran in November 2012 and has been updated for the October 2013 paperback edition. Go to magazine.