DEHUMANIZING ASHLEY

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.

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3 thoughts on “DEHUMANIZING ASHLEY

  1. Peter,I agree with your comments 100%. I read the news article last week and was surprised, as I did not realize that medical procedures that were described in the article were legal. Who determines what a “managable size” is? Personally, I feel that the parents are interfering with the Creators works.

  2. There is a coordinated effort to address the poor management practices of this hospital’s ethics board. I have attached it, wtih some other weblinks below.—-Feminist Response in Disability Activism (FRIDA), with the support of Chicago ADAPT, the national ADAPT community and Not Dead Yet, urges you to speak out about the “Ashley Treatment.”Our Targets: Seattle Children’s Hospital staff involved in the case of nine-year-old Ashley’s growth attenuation and sterilization, as well as Melinda Gates, chair of the Seattle Children’s Hospital fundraising committee and Susan Macek, Director of Communications for Seattle Children’s Hospital. We need to let the Seattle Children’s Hospital and its fundraising chairperson know that the Ashley Treatment has not gone unnoticed by those of us who live with disabilities.ACTION:1. Email OR Call the people below2. Tell them to:a. Oppose their permission of what is now known as the “Ashley Treatment,” and b. Condemn further permission of such “treatments” for children with disabilities. Dr. Douglas DiekemaPhone: 206-987-2380B-5520 – Emergency Medicine4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Douglas.diekema@seattlechildrens.org Dr. Daniel F. GuntherPhone: (206) 987-2380M1-3 – Endocrinology4800 Sand Point Way NESeattle, WA 98105Fax: (206) 987-3836E-mail: Dan.gunther@seattlechildrens.org Melinda GatesPO Box 23350Seattle, WA 98102Phone: (206) 709-3100Fax: (206) 709-3252Email: info@gatesfoundation.orgSusan MacekDirector of Communications, Seattle Children’s HospitalPhone: (206) 987-5201Pager: (206) 469-6310E-mail: susan.macek@seattlechildrens.orgOTHER INFORMATIONTo review Ashley’s parents’ blog, please see:http://ashleytreatment.spaces.live.com/To review other articles on this topic, please see:http://news.bbc.co.uk/go/pr/fr/-/2/hi/americas/6229799.stmhttp://www.dredf.org/news/in_news.shtmlMary Johnson of Ragged EdgeCory SilverbergArthur Caplan, Ph.D., Director of the Center for Bioethics at the University

  3. Peter:I completely agree with you. I don’t understand what makes them think they have the right, be it parents or not, to alter this child so horrific medically.I have seen instances where children are diagnosed vegtables that have gone on to prove the medical community wrong.The best story that comes to mind is Dick and Rick Holt. Its a must see video if you haven’t seen it:http://www.youtube.com/watch?v=g8sqFJwnuksAs a side note I would like to thank you for stopping by my blog and especially mentioning Colton. After reading your story, you are an amazing human being, truly inspring and you have lived through all that you have lived through to inspire the rest of us. You have truly found your destiny.KindraLore

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