Saturday, May 12, 2007

Ashley X

Report: 'Pillow angel' surgery broke law

Well, duh.
If doing medically unnecessary surgery to a child with a complicated medical history isn't illegal, it should be. (In a nutshell: Ashley X was 6 years old. She had static encephalopathy -- unchanging brain damage. She was treated with massive hormone doses to "attenuate" or stop her growth. She also received a complete hysterectomy and removal of breast tissue).

The confusing part is that the parents and ethicists give conflicting views about why this was done. When speaking of the attenuation, they cite that it isn't for convenience, but for her own comfort, yet they also say now it will be easier to include her in more activities and she can be cared for at home. (So yes, they might actually believe she will be more comfortable, but the reasons they cite are all convenience reasons -- it will be easier.) The discomforts she might face when growing older, say bed sores, etc are not medically pressing at this time. I look at it as cutting off your feet to avoid death by infected splinters that MIGHT happen. (Okay, infected bedsores are more likely to kill than an infected splinter, but still -- a radical action is not justified by the future risk).

The parents say they were worried about menstruation. Well, yeah. Every parent of every girl with developmental disabilities worries about that. And you know what? Most of the time, they get through it fine. If they don't, there are birth control pills to control it. That makes much more sense than major surgery on a SIX YEAR OLD who won't menstruate for years.

Removal of the breast buds to spare her from developing "uncomfortable" breasts? Uh-huh. It's not just they are keeping her small by attenuation, which is unethical, but all together an understandable desire. Removal of her uterus and her breasts, along with attenuation, add up to a disturbing conclusion: they are keeping this girl a child forever.

There are several really disturbing things here:
1) unless they made themselves immortal, they will still someday have to think about who will care for Ashley when they are gone. And Ashley's needs will be more complex and more exceptional because she will be the size of a 6 year old when she's 30.

2) I don't buy the argument that she's really a 3 month old in a 6 year old's body which makes this all somehow okay. No professional should as well. I have met so many people with so many different kinds of developmental disabilities. They ALL grow and change and mature, even the most severely impaired. Cognitive age only means she's hit milestones that a 3 month old hits -- a TYPICAL 3 month old, with use of his/her voice and limbs. To judge Ashley's against that scale is helpful by way of comparison, but doesn't really show much about her --it's like judging someone with no legs on how fast they can run. No one KNOWS for sure who is "in" there. She is not a 3 month old. She is a 9? 10? year old with severe developmental disabilities. Big big difference. Unless a person understands this, he/she should not be allowed to make decisions for someone with a disability.

And why did they give up on her at 6 years old? I know of kids that learn to walk at 14 years old.

Her cognitive age does NOT make this okay. Even if you disagree with me, even if you think she's really an infant, it is still NOT OKAY to do this.

3) Ashley is not so far out of the class of human being that we shudder and say "We can't judge." Although Ashley's care is extraordinary, society DOES have the right to judge how we treat children. That's why there are child abuse laws. If you couldn't get away with it on a typical child, you shouldn't do it to a child with a disability -- or at least without many procedural safeguards.

4) They say that breasts and secondary sexual characteristics would "sexualize" her to caregivers. In fact, one of the ethicists said "gone is the risk of sexual abuse." Um... excuse me?
This shows an ignorance of why sexual abuse happens. And it ignores the fact that sexual abuse happens to children who have no secondary sex characteristics yet and is most likely to be perpetrated by people in someone's inner circle. Caregiver abuse happens more when the person with the disability is not out in the community, does not have a circle of supports including friends, family, and non-paid supports along with maybe paid staff to help balance the amount of power and control that one person has over someone else's life. Also, more people = more people to notice if something's wrong.

5) I have met so many people through my work-- other people's kids who I love and care about as if they were my own. More importantly, people I consider friends. They are assuming that people won't see what Ashley has to offer as far as a relationship with a caregiver or friend is concerned. They assume only they could love Ashley. That's selling their daughter short.

Who can blame the parents? They are afraid, they worry about the future. The support systems in the U.S. are not great. I wasn't angry with them until they started advocating it for other children.

But the so-called doctors and so-called ethicists who gave permission to do this to a child should have their licenses "attenuated."

Ashley is not so far out of the realm of human that we can say you can do things to her body that you wouldn't dream of doing to a typical child's body. She is a human being. Not a doll. Not a pillow angel.

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