I wasn’t going to write about this because it upsets me too much, but it doesn’t seem like any of the major bloggers are exactly jumping on it (I lie–there was an Alas post eventually), which shocks and disturbs me. I expected this to be immediately addressed by at least a few people, but…the only person to do so was brownfemipower. (As usual.) So here I am, since no one else seems to actually care and I just can’t believe it.
I don’t even know what to say about this. There are just no words I can coherently string together well enough to express my total moral outrage.
Short version of events as told by the BBC (linked above):
Parents of a severely disabled girl in the US have revealed that they are keeping her child-sized in order to give her a better life.
The nine-year-old, named Ashley, has the mental ability of a three-month-old baby and cannot walk or talk.
Along with hormone doses to limit her growth, Ashley’s parents also opted for surgery to block breast growth and had her uterus and appendix removed.
They say the treatment will help to improve her quality of life.
I’d highly recommend looking at the parents’ blog since it’s a little more complex than that, but I really don’t want to spend a lot of time just regurgitating the details. You can read for yourself.
Here is what I think: No one should be subject to such drastic medical procedures if they are unable to consent and it’s not absolutely, demonstrably necessary. Period. It doesn’t matter what a person’s level of cognitive development is, everyone is deserving of basic human rights and that includes the right not to have organs removed unnecessarily. (More on that later.) Here’s a choice quote from the BBC article:
George Dvorsky, a member of the Board of Directors for the Institute for Ethics and Emerging Technologies said: “If the concern has something to do with the girl’s dignity being violated, then I have to protest by arguing that the girl lacks the cognitive capacity to experience any sense of indignity.”
It does not matter if she does not have the cognitive ability to protest or understand what is happening to her. That does not mean she is not deserving of the same basic rights as all other people. If anything, this means she is deserving of further protections than normal since she cannot advocate in her own self-interest.
Furthermore, the justifications her parents give are, frankly, BS. No matter how her growth might inconvenience them, I’m sure they could work around it. It might be more difficult to move her around but I’m sure they’re creative people and they could come up with a solution — after all, didn’t they have to figure out how to care for her to begin with, after realizing how severely disabled she is?
Arguing that preventing the development of her breasts is a preventive measure strikes me as wrong. Their (medical, we’ll get to the rest later) reasons are: “Avoiding the possibility of painful fibrocystic growth and future related surgeries. Women in Ashley’s lineage have a history of fibrocystic growth. … Avoiding the possibility of breast cancer. Ashley has breast cancer history in her family.” There are plenty of people at risk for different diseases and cancers; what is important is regular screening. It is not routine and does not make sense to simply remove body parts as a preventive measure just in case cancer develops.
The only preventive measure they are taking with which I can agree is the removal of her appendix. It might be difficult or impossible to tell if something went wrong until it was too late, so that procedure seems sensible to me.
The argument for the removal of her uterus is as such: “Ashley has no need for her uterus since she will not be bearing children. This procedure will avoid the menstrual cycle and all the bleeding/discomfort/pain/cramps that are so commonly associated with it.” There are treatments available such as certain kinds of birth control which could prevent her from menstruating without the need for such an invasive procedure. This is unnecessary in the extreme. (Although I am of the opinion that menstruation is a natural bodily function which should not be inhibited simply because it’s “gross”. If a person finds it extremely unpleasant or painful, that’s different and more than justified. That said, even if I don’t agree, people can certainly do what they want with their bodies–keyword: theirs.)
Then there is the justification that “she won’t need it”. Technically, I suppose, no. Just because she will not use her uterus for bearing children doesn’t mean she “doesn’t need” it. She probably will never walk, either; does that justify amputating her legs? Everyone has a right to basic bodily integrity. There is no reason to remove a healthy body part simply because it will never be, in the most basic utilitarian sense, “necessary”. This argument makes very little sense, and strikes me as extremely callous.
Then there are the other reasons. The frightening ones:
Additional and incidental benefits [of the hysterectomy] include avoiding any possibility of pregnancy, which to our astonishment does occur to disabled women who are abused…
Large breasts could “sexualize” Ashley towards her caregiver, especially when they are touched while she is being moved or handled, inviting the possibility of abuse.
This is, unfortunately, a very real concern. However, I think their approach is misguided. For one, pedophiles will readily abuse her even if she continues to look like a child when she’s older, and not only women with large breasts (or who are even conventionally attractive) are raped. If someone is sick enough to sexually abuse someone so severely disabled, I highly doubt the presence or absence of breasts will have much to do with it.
As for the hysterectomy: I see no reason why this matters. All this will do is prevent her from becoming pregnant should she be raped. That will not change the fact, in that eventuality, that she would already have been raped. That aside, there are plenty of other ways to prevent or end a pregnancy should one occur, none of which strike me really as more or less morally questionable than this course of action already is. This is another case where, as a preventive measure, I doubt it does much real good.
These justifications here deeply disturb me because of how they buy into common misconceptions about rape and rapists’ motivations, and they will do little to help any actual problems which could arise.
I think these procedures are medically unneeded and unethical. But…and this is important…I do not think the parents are bad people. I’m sure they love their child and are trying to do the best thing for her that they can, even though I believe their actions are wrong. It’s very clear that they think this is the best course of action available to them, and the fact that we live in a society where there are not many other readily available options is deeply unfortunate. I do not know that there are many practical solutions which this family can afford. I only know that this treatment is not an ethical solution — and as someone who is deeply concerned with the rights of all people (and other living things) I can do nothing else but condemn what has been done to this girl.
