The parents of a nine-year-old Washington State girl say their decision to sterilize their daughter Ashley and medically restrict her growth will better assure her safety and quality of life. No matter how you hold their decision to the light, the view is tragic.
Ashley lives with a condition called static encephalopathy. According to the National Institute of Health, “Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure.” Static simply means the condition is not deteriorating. In other words, Encephalopathy is a catch-all phrase.
There can be no doubt that the ethical dilemma swirling around this controversial treatment, performed at Children’s Hospital in Seattle, is in large part linked to society’s failure to make sure people with disabilities are guaranteed the same level of human rights as everyone else.
Ashley cannot walk, talk or swallow food and is cognitively impaired. Her parents are her primary caregivers. In their blog her parents say the treatment “includes growth attenuation through high-dose estrogen therapy, (a) hysterectomy to eliminate the menstrual cycle and associated discomfort to Ashley, and breast bud removal to avoid the development of large breasts and the associated discomfort to Ashley.” As a result of the treatment, the parents say Ashley will “be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around. Ashley’s smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.”
Her parents call Ashley their “pillow angel.”
Whether you agree or disagree with Ashley’s parents and their medical team, there is something disturbing, even barbaric, about sterilizing and altering a child’s growth in order to make life easier for caregivers and allegedly assure the child’s quality of life. It is an honest but misguided belief that the removal of Ashley’s breast buds will significantly diminish the chance of sexual abuse. The absence of breasts will not deter pedophiles and other sexual predators.
It seems to me that the response (pro or con) to the unsettling treatment chosen by Ashley’s parents and medical team is in large measure rooted in a more sinister reality: the continued dehumanization of people with disabilities. What does it say about a society that apparently believes it can best protect a child from sexual assault by sterilizing the child and removing some body parts? What does it say about a society that would rather stunt a child’s growth than provide the community services the child and family deserve? What it says is this. We live in a society still wedded to a social tenet that is simple and wrenching: the greater the damage to a person’s physical and/or cognitive functioning, the less human they are. After all, the parents of a child paralyzed from the waist down would never be allowed to have the child’s legs amputated simply because it would be easier for the child to be physically managed and easier for the child to maneuver a wheelchair in tight quarters because there would be no leg rests.
A report by Dr. Daniel F. Gunther and Dr. Douglas S. Diekema, members of Ashley’s medical team, says “Achieving permanent growth attenuation while the child is still young and of manageable size would remove one of the major obstacles to family care…”
The words that trouble me most here are the words, manageable size. While the words address Ashley’s physicality, they miss her humanity, and that is the greatest tragedy of all. When we lose sight of another’s humanity, we are all lost.