Blue has posted some good links to editorials about the Ashley Treatment. This article really struck me.

If you believe in basic human rights, you have to extend them to all humans. You can’t say that you believe in human rights, but not for people who can’t articulate their value. You can’t say that you believe in human rights but not for people who would be better off dead. If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights.

That’s why it’s important to talk about this. That’s why it’s important to condemn it.

People with disabilities are first and foremost people with rights. This includes a basic right to bodily integrity. It’s very sad to me that feminists can forget that so easily. You cannot work for equality if you do not work to uphold the rights of all people. (It seems self-evident. Like so many things, apparently, it is not.)

I think this post by Thirza is worth reading. She looks at the Ashley Treatment through the lens of her personal experience with a disabled sister.

Sour Duck has linked to some other posts about the subject. And here’s more at The Procrastinator’s Handbook.

I’m still disappointed that there’s not more outrage in the major feminist blogs. (Amanda at Pandagon’s response can only be described as completely bizarre. Piny hasn’t made a post yet but he’s been active on other threads so I expect to see something at Feministe soon. Feministing? Who the hell knows?) But if this whole matter has made one thing clear it’s that I need to have more disability rights bloggers besides the Gimp Parade in my regular reading list.

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.

I didn’t really know about this until a day or two before, so I’m a little late. Whoops. Today we’re Blogging Against Disablism. (Although I’ve always heard “ableism”. Ah, well.)

I wasn’t at first going to do this. I thought, such short notice, I won’t have time, and what will I say? It seems like something I can’t talk about. I don’t really have any disabilities. I enjoy a great deal of privilege in that I can travel wherever I want, I am capable of walking for miles at a time. I’m in very good health. I don’t have dyslexia or any other learning disability which makes it difficult to focus, read, or write. I’m very fortunate.

But not everyone I know is. In fact, I’m so surrounded by people with various disabilities that, while I hardly even think about it (which is of course my privilege), it might seem downright odd to some people. I’m not trying to say this as a, “I have a token (insert whatever here) friend”, simply making clear that I do have a personal stake in this and it is something I am aware of in my life. It’s just… what could I say? What could I do? I don’t want to take the focus off of the people it should be on. I want them to tell their stories, to tell their point of view. It’s difficult to balance my attempts at advocacy work with not wanting to unintentionally undermine it. But this is an issue which I think is important and I will say something. As Goldfish has said, this isn’t a sexy topic like sexism or racism or heteronormativity. But it is important. And it’s necessary. Because so many people don’t think about it. So many people are completely unaware.

The whole phenomenon of ableism is largely invisible. That’s why it’s necessary to write about it. People with disabilities are invisible, too.

Have any of you able-bodied people ever gone anywhere with a friend in a wheelchair? They’re ignored. You’ll be asked to speak for them, or they will be addressed like children — exceptionally stupid children, at that. That’s if they’re noticed or seen at all. People think that staring is rude, so they don’t stare, instead they willfully overlook and pretend the person isn’t there. Staring may be rude, yeah, but invisibility is worse.

What’s necessary is not pretending that some people don’t have problems. You’re not going to help someone who can’t walk by leaving them on the ground and pretending they don’t have specific needs. Able-bodied people need to overcome their discomfort, swallow their pride, and accept that sometimes you have to make accommodations for people, but that doesn’t mean they’re children. That doesn’t mean they can’t take care of themselves, or that you know what’s best for them better than they do. It just means that you ask them if they need help, and give it if they need it. Respectfully, nonjudgmentally, politely.

The two extremes I see able-bodied people take again and again are either ignoring the problem and hoping the person disappears, or overcompensating and assuming it’s okay to try to control the person’s life since they obviously can’t do anything for themselves. It’s invisibility or total lack of personal autonomy. Neither is the solution and I don’t advocate the latter at all.

One example I have personal experience with. For most of last year, I worked in a school for gifted children with learning disabilities, basically doing grading and data entry. The kids here range from severely autistic, to uncontrollable ADHD. Most of them are very sensitive and prone to sensory overload, shutting down or panicking or freaking out if they are overstimulated. This school is very small, and caters to the specific needs of each individual child, encouraging them to advocate for their needs — if they can’t take the noise, they can wear headphones, if they can’t hold still, they’re given “fidgets”, objects to play with while they do their work. I found the job extremely rewarding, and the teachers, though they sometimes get worn out, are all very wonderful people. There were some administrative problems, I thought, things not being handled as smoothly as they could have been, but overall the approach was good. And it works. There have been so many children in the short time this school has been open who were hopeless cases, violent or suicidal, who have been encouraged to work at their own pace, to develop their own unique creative skills, to follow their interests, and the results have been amazing. These kids are encouraged to understand their bodies, their needs, their triggers, so that they can control themselves and adjust to their environment. They are not treated as if they are broken and need to be fixed; instead the approach is more to empower them to make informed choices and to take care of themselves to that they can be happy instead of depressed and overwhelmed. Some of these teachers are saints.

This is the approach that we all need to take in combating prejudice against ableism. We need to be understanding and sympathetic to everyone’s individual needs, be they emotional, mental, or physical, and we need to do this all with respect and kindness. It doesn’t matter if the able-bodied among us don’t personally experience prejudice, because it is there, and anyone who thinks that prejudice is wrong can be an ally, so long as we realize that “ally” does not mean “savior” and it does not mean “surrogate parent”.