It’s a question I would never have considered possible. But today I read an article that was both fascinating and troubling. PEOPLE magazine reported the heart-wrenching story of a nine-year-old girl with severe disabilities, and her parent’s controversial decision to use hormones to halt her growth and physical maturation. (PEOPLE, “Girl, Interrupted,” January 22, 2007, by Macon Morehouse.)
Ashley, from Seattle, has static encephalopathy, a condition of the brain which has left her developmentally like an infant. She is unable to walk, speak, and is typically seen propped with pillows, because she dislikes being strapped to her wheelchair in an upright position. She cannot even hold her head up. Apparently at the age of six she started showing signs of early puberty, and as she began to grow bigger, her parents made a plea to her doctors at the Seattle Children’s hospital. They requested to have her uterus and breast buds removed, and to start hormone therapy to keep her a child… forever.
When the story was reported in a medical journal, harsh critics spoke out in protest. Many people, including some medical experts, felt these actions were “Frankenstein-esque.” They argue that Ashley will be made into a freak who is forty years old and still the size of a child. But Ashley’s parents explain that their decision comes out of love. They want to be able to carry, cradle, and hold their daughter, who will always be mentally like an infant. They say that what is really grotesque here is the idea that a full grown woman with the mentality of a six-month-old would have to endure menses and the awkwardness of her large body being transported from her bed to her wheelchair, while needing diapers, etc. They add that keeping her small would enable her to travel more easily and make caring for her, which will be their lifelong responsibility, a little less difficult.
So tonight I have been contemplating this question, and I am truly torn. Is it unethical to surgically alter a disabled person, keeping her eternally a child, for her parents’ convenience? Or, is this a humane decision that takes into consideration the well-being of this very special individual? It’s a decision I thank God I don’t have to make. I do wonder whether “Ashley Treatment,” as it is now being called, will become a trend for families with severely disabled children.
The Seattle Children’s Hospital doctors decided to honor Ashley’s parents’ request. Ashley will now always be, both physically and mentally, a child. Her close-knit family has a blog where they defend their position passionately. You can visit the blog by clicking here.
This issue is being discussed online all over the internet. Heather Long has written an excellent article on this topic in the “Baby” blog. I was unaware of her post but wanted to keep the issue available in Special Needs, since it seemed so applicable to parents of special needs children.
Kristyn Crow is the author of this blog. Visit her website by clicking here. Some links on this blog may have been generated by outside sources are not necessarily endorsed by Kristyn Crow.
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