The Ashley Treatment

Earlier this week, the BBC reported about Ashley, a nine year old with severe/profound disabilities who lives in the US. In 2004, her parents elected to have what they are calling "Ashley's Treatment:" a hysterectomy, removal of her breast "buds" and hormones to slow her growth. Recently, there has been a lot of press about the issue and a lot of blogging by disability rights people.

When I first read the BBC article I was outraged. I then did a google search and couldn't find the parents' site, hoping that it provided more insight. I then did a blogger.com search and finally found a link to her parents' site explaining their actions and why they took these extreme measures. It took me two days to get through the site because I would get outraged and have to stop reading. This morning, I finally finished reading and here are my reactions.

First, there are some medical concerns on the part of the parents. However, they gloss over these because these are not their primary reasons (but probably the ones that got them ethics approval). There is a history of extremely large breasts in the family. The parents say that this would cause discomfort when lying down and also would cause problems with the harness system on her wheelchair. There is also a history of fibrous growths in the breasts of women in her family. But to remove the breasts before they develop?? That still seems extreme.

To remove her uterus so that she cannot become pregnant if abused or to alleviate menstrual issues? First, protect your daughter. Not having a uterus does not take away the potential for abuse. Unfortunately, all people with disabilities are at higher risk of being abused, whether they appear "sexual" or not. There are far less extreme ways to manage menstration than removing a uterus (like continuous dosing of the pill, the implants, Depo).

About slowing her growth. There are hoists and other ways to lift. Many people with disabilities are included in their families. Parents don't talk about their child's size as a reason for them not being included. They tell me lots of other reasons but size has not really come up. Well, it has in that they need new seats for in the car or parents apply for funding to get an adapted van, etc. But Ashley's parents keep talking about how boredom is her main issue. I just don't see how these medical interventions will alleviate that (social) problem. If boredom is her main problem, she needs more stimulation and different kinds of stimulation.

Reading about the issue, I keep thinking, how were the parents allowed to engineer their daughter? Removing perfectly healthy tissue and giving her hormones to keep her small and manageable. I think that the people saying this is a medical solution to a social problem are absolutely correct. Even though I think it is mutilation, I can understand on some level why the parents would want to keep their child smaller and less developed. However, I think it stems from their perceptions of their daughter and their own grief. They refer to their daughter as a "pillow angel." I know some people may not find that derragatory, but I do. When they speak of their daughter, the talk of her like they think she is a doll.

According to George Dvorsky, a doctor who supports the parents' decision:
"Moreover, this girl is severely disabled enough such that her self-awareness is virtually negligible. She is barely engaged with her outer and inner worlds. Nonetheless, like an infant, she requires care such that she remains comfortable and finds herself in a loving environment. Ultimately, however, the estrogen doses are not so much for the girl as they are for the parents. Aside from the enhanced care that she will receive from her parents as a result of the treatments, the doses will have no bearing whatsoever on the girl given her permanent condition."

In this statement, a few huge issues arise for me. One, the medical intervention was for her parents. When did we start having medical interventions for other people??? Two, the idea that if she grew more, the parents wouldn't be able to care for her at home. This idea is rubbish to me. There is plenty of adapted equipment out there to make caring for a child at home possible. To the best of my understanding, it is funded by medicaid, a U.S. fedaral program, in the U.S. and the health service here. Charities also help with funding in the U.S. Parents all over the world make modifications to their houses to keep their children at home. They don't give them surgery to make it more convienent for them.

But that is not the main issue that I have with this doctor's statement. It is the comparing her to an infant. Many people have sited her intellectual capacity as rationale with this. Ok, she can't take care of herself. Yes, her intellectual functioning tests very low. However, we have no idea how people with cognitive impairments of this level process the world. The parents say that they aren't sure if their daughter recognizes them. They aren't sure that she doesn't. She is still a human being who is able to process the world in some manner. She still should have basic human rights. It just feels like the parents are engineering their daughter to stay the way they want her. I don't get the impression that they see fully as a person.

Now, I have to have a caveat here that I have encountered many people who do not see people with cognitive impairments fully as people. They think of them in terms of their tested cognitive ability, not in terms of who they are, what their preferences are, and as people able to exert some control/express preferences in their world/life. But that is a (large) social problem.