Ashley X Controversy: Girl with Cerebral Palsy has Brain Functioning of a Baby

Somewhere in the United States lies a severely disabled little girl. She is chronologically 10 years old, but likely has no awareness of the growing controversy swirling around her. According to CNN, which interviewed her family exclusively on condition of anonymity, Ashley has the mental capacity of a 6-month-old infant. She was born with cerebral palsy, and will always require care for feeding, bathing, diaper changes and more. When Ashley was six years old, her parents began an extreme (and illegal) course of action - finding a way to keep Ashley in the body of a child forever. At Children's Hospital in Washington State, doctors removed Ashley's undeveloped breast buds, performed a hysterectomy and prescribed estrogen therapy to further stunt her growth. Now, at the age of ten, Ashley has stopped growing and reached what her parents believe to be her final size - 4 feet, 5 inches and 63 pounds.

According to her CNN's interview with her parents, they believe the process "has been successful in every way." According to her parent's blog, increased height and weight are the "greatest enemy" for children like their daughter, whom they term "pillow angels". They believe the benefits of their daughter remaining small and sexually undeveloped are many: that she will not have to suffer through menstrual pain and bleeding, that she will be easier to care for and thus better cared for, and that, because of this, she will be able to stay with her family indefinitely, as opposed to being placed in an institution. Indeed, in the pictures appearing on her parent's blog, Ashley appears to be as healthy, happy and well cared for as a child in her condition could be. Her parent's are now on a mission: to provide information and support to other families with children like their daughter - families who might consider the "Ashley Treatment" a viable option.

There are many problems, many ethical concerns and many opponents to the drastic course of action her parents chose to take. Although a board of multidisciplinary ethicists at Children's Hospital apparently agreed to go ahead with the procedure, the hospital has admitted that it broke the law in doing so. Regardless of what benefit her parents thought they were bestowing on her, what they did was against the law. Additionally, Ashley's treating physician, endocrinologist Dr. Daniel Gunther recently committed suicide. Although one might reasonably wonder if Ashley's case was a factor in Dr. Gunther's problems, her parents say that is not the case. Dr. Gunther, they say, was actually frustrated that he could not "help" other disabled children in the way he had "helped" Ashley.

The disabled community and advocacy groups have been quick to condemn the "Ashley" treatment, for reasons that are easy to imagine. Ashley has essentially been 'modified' to make her more convenient and portable to care for as a disabled adult. By her parent's own logic, they could just as easily have amputated her legs. It would have reduced her weight further, it would have made her easier to carry around and she's certainly not going to use them. In their blog, her parents would have us believe that everyone who is in their situation agrees with them - that the opponents are mostly just people who have no experience with "pillow angels". But a simple online search negates that opinion. Many parents of young, teenage or even adult "pillow angels" have come out against such a procedure.

What are the implications of such a public and shocking case for disabled Americans across the country? It is hard to say what the impact will, ultimately, be. Like the Schiavo case before it, the "Ashley Treatment" sets a disturbing precedent, regardless of its effect on Ashley and her family. To speak for those who can't speak for themselves, to make medically unnecessary modifications, to miniaturize someone with surgery and hormones so that they are effectively easier for the caregiver - it offends basic human dignity. It may make Ashley's life easier, it will definitely make caring for her more convenient, but is that really the question? If severely disabled children have a right to live, then don't they have the right to live? To feel happiness, and sadness? To grow? Can inconvenient parts of their lives and bodies be snuffed out? If they make loud and erratic noises, can their voice boxes be removed? If they hit themselves or their caregivers, can their arms be amputated?

When I was a young girl, my mother had a friend whose adult son was severely disabled. He could not talk or feed himself, but he could walk. He was large, and had a tendency towards violence. His mother lived on public assistance so she could care for him, and his father had left her. Stunting his growth and stopping his male development may have prevented many of the problems she experienced. He likely would have experienced less in the way of violent tendencies. His decreased size would have made him less dangerous and easier to control. But is that a decision that any human being should be able to make regarding another? I can't say, I don't know if anyone apart from Ashley should, and she cannot speak. Regardless of the reasons behind the "Ashley Treatment," I will continue to feel for Ashley - a young girl who has been irreparably modified, and will probably never know.