The first week of January, a story hit the media about Ashley the “Pillow Angel,” a severely disabled young girl whose parents chose surgery to stunt her growth and remove her sexual organs. Their point of view appears on their blog:http://ashleytreatment.spaces.live.com/blog
Because of her experiences living life as a physically challenged person, my friend Judy H. felt the passionate need to share her own point of view. So she is my guest blogger for today. Here are Judy’s words:
PILLOW ANGEL, MY ASS!
Let me start off by saying I’m handicapped & I thank the good lord every day that my parents WERE NOT like Ashley’s parents. I contracted spinal/bulbar polio, in 1950, when I was 13 months old (spinal/bulbar polio not only affects the limbs, but also the lungs). I was placed in an iron lung & my parents were told that at best I would die, worst case scenario I would live in an iron lung, paralyzed for the rest of my life.
What did the doctors know about a parent‘s determination and a child‘s will? I survived, came out of the iron lung, learned to walk with crutches & braces, endured 10 years of surgeries (funny how doctors just love to experiment), went on to college, worked for 30 years, etc, etc, etc. which brings me to Ashley.
For those of you who might have missed it, there was an item on AOL, Jan. 5th about a disabled child whose parents opted for what I consider an extreme solution to the problems of rearing a child with mental & physical problems. I know from personal experience that parents feel some sense of guilt when it comes to having a handicapped child (& please don’t tell me they don’t). Sometimes from guilt comes misguided notions…and that’s perfectly normal.
Ashley’s parents went before a panel of doctors & ethicists with their “plan”, which was approved. Whatever happened to the Hippocratic Oath that all doctors swear to—FIRST DO NO HARM? To mutilate your child, remove all traces of her feminine identity and stunt her growth is unethical, immoral & borders on the criminal.
Ashley’s parents say that they wanted to keep her small so she would be easier to move about, they wanted to spare her the discomfort of the menstrual cycle, they wanted to spare her breast cancer. HOGWASH!!!!! Did they think that a double mastectomy and a hysterectomy wouldn’t be painful??? Did they think through what years of HRT will do?
There are thousands of parents in similar circumstances who deal with these problems every day—they care for their disabled child with love & compassion. Yes it’s difficult, but when you choose to have a child, you take the good with the bad. First designer babies…now designer disabled children? Where does it end?
Seventy years ago the practice of sterilization of mentally and physically challenged people was called EUGENICS. Have we as a society become so self-centered that we see no wrong in making life as convenient for us as possible and damn the consequences? Remember, we are all one severe brain injury away from Ashley.
Notes from Ronnie Ann: Although I cannot put myself in my good pal Judy’s shoes (or more to the point, on her ever faithful crutches), my own doubts surrounding the parents decision center on these thoughts in no particular order:
* The parents say they did this to keep her small, so they could more easily carry her around, but I doubt someone in her state who is mostly in bed would ever grow that large or that heavy. You can’t assume she’d reach normal proportions or bone density.
* I also read that by being lighter, she will have less bed sores. I am assured by Judy that a friend of hers who is a nurse says that isn’t true.
* Many parents have children who are unable to move about on their own. Should all these children have their sex organs removed too? And what about those with extreme mental disabilities? Where do we draw the line?
* The articles say her parents call Ashley their “Pillow Angel”. My understanding of how you sell a distasteful idea is to give it a sweet name that projects an image you can’t argue with. This is called branding. Is this choice being sold to us by cleverly repackaging what normally would be a pretty tough concept to sell?
* The articles say there is breast cancer in the family, therefore the surgery to prevent breast growth is a good thing. But reports say they also gave Ashley HRT. For how long? Is that so great for someone with cancer in the family? What will all this do to Ashley’s bone density/brittleness?
* I understand that Ashley is not like Judy, but there’s a slippery slope here. When else would it be ok to redesign a person so drastically? Judy brought up eugenics. There were doctors and ethicists that argued for that policy. Some probably still do. There are a lot of mentally and physically challenged women for whom periods are a pain. Why not take out their organs too?
* If this were a guy, would they have so easily decided to remove his sexual organs?
* Rather than have all that expensive surgery, couldn’t a portion of that money simply have gone to getting some really good wheelchairs and devices to help lift Ashley and make her travels as comfortable as possible? We are presented all this as if it were the only logical solution. But was it really?
* The articles state that Ashley is taken to a special school as of the last couple of years. What if there is even the slightest chance that she’ll show some improvement and advance even to the mental age of a young child? The brain can sometimes do some amazing recircuiting. Would the drastic measures be warranted then? Yes, she’d still have no need for her sexual organs, but neither do many other severely challenged children. Should all be subjected to the same drastic measures?
I could go on and on, but my main point is: Is this really such a compassionate and loving solution, or was it simply a way to make Ashley into a more manageable entity? Even though at first thought this might all make sense, if we look a bit deeper, isn’t this just a little bit scary and ill-advised as acceptable public policy?
I know that her parents may have sincerely done this because they were advised it was the best thing for Ashley and, of course, now they need to feel that they made the right decision. I respect that possibility. But for future thought…just how many people do we know that we’d like to make more manageable?
Comments from all points of view very welcome!