Ahh...

The joys of academia.

Locationography

Plenty of places left out, I'm sure.

The Ashley Issue

For those who don't have the background: here.

I finally gave up planning an organized response and decided to just offload about this...situation. It's going to be terribly disorganized and rambling, but bear with me.

Objectively, I can see the appeal of both sides.

On the parents' side, having a family member with a developmental and physical disability can be difficult. They seem to want to include her, at least physically, in their family life -- they want her physically present wherever they are centered. I can see how this could be to her benefit as well as theirs -- she'll be included in and able to observe her family. Their solution to this physical problem is to make her more portable. I suppose that's logical. More on this later.

Against the parents, they want to stunt her sexual development because they think it would be undignified or wrong for the intellect of an infant (I doubt the accuracy of this description -- more on that later) to possess the body of a sexually mature woman. Flat out, I think this is bullshit. The parents are afraid of dealing with sexuality in an arena that's unfamiliar and therefore makes them uncomfortable. I hate to break it to you people, but individuals with developmental disabilities have sex drives too. I know the fact that many people think of them as children makes that an uncomfortable thought, but it's reality (and even pre-pubescent children have sex drives -- small children can and often do masturbate). Deal with it. Stop being ashamed of/for your children. They should be able to enjoy their bodies like everybody else. If they'll never be mentally capable of taking on the responsibility of sex with a partner, let them masturbate. It's their right as a human being. It's not like they won't figure out how if it's at all physically possible. Why not try adjusting your attitudes before you physically take something away from her?

Back to the portability issue. My dad pointed out in conversation that technology and engineering are at such a level that moving a single human body around a household, in and out of a car, practically anywhere, is possible. It's money that's the limitation. And I can't help but think the cost of the technology and equipment needed to install bed lifts and wheelchairs would be small compared to the cost of this (irreversible) medical treatment. Until someone shows me exact numbers showing that equipment to move an adult body around would cost more than this treatment, I'm not buying the portability-as-inclusion argument.

Onto another facet. People with developmental disabilities, especially with more profound cognitive disabilities, have little enough control over their own lives. Why take away control over one more thing -- her right to let her body develop as it will. That's practically the last chance for autonomy she's got. Everything else is decided for her and managed by her parents/family. Why not leave her something of her own?

Mind of an infant.... I'm tempted to say "Mind of an infant, my ass." But I really don't know what her intellectual capacity is. However, I know that in many cases, what's going on inside someone's head would shock and amaze those only familiar with the outside appearance. Even close family members, those who know them the best. She may be capable of making a decision like this for herself. If not now, maybe later in life. The only way to find out is to take the time to help her learn to express herself. And from the little I've read, she has at least minimal awareness of her environment and the ability to react to it -- that's the basis of learning. It's at least somewhere to start. It proves she's not incapable of at least some learning. I have to wonder exactly how much time and effort has been put into teaching this girl.

Now let's talk about hormones:

For a woman who’s premenopausal, a complete hysterectomy will have a significant impact on hormonal balance because the ovaries are such an important source of hormone production. Even a partial hysterectomy can have a significant effect, first because the uterus plays a role in hormonal balance, and second because in most cases the circulation to the ovaries is impaired enough by the surgery to affect their function.

From what I understand, Ashley only got a partial hysterectomy. But, as a five second Google search told me, partial hysterectomies still affect hormones. Hormones affect the brain. Brain affects behavior and quality of life. Ashley's parents are closing a door here. They don't know what would happen to their daughter's brain once puberty set in. Sure, it might cause some discomfort or upset. It's usually a little unpleasant for typically developing people. But, in my admittedly limited experience, adolescence can coincide with huge changes for people with disabilities. The girl I teach has made tremendous progress since I've been working with her. I started when she was 11, and she'll be 13 soon now - in the midst of puberty, in her case. It's changed her. For the better. Her improvements can't all be pinned on adolescence, sure. Correlation does not prove causation. But it's a pretty damn good correlation. And I can't help but think that she'd be sad, if not outraged, if she were forced to miss out on this part of her life.

I am not a Christian, and I don't believe in God. I don't think God intended her to be the way she is. I don't think she is the way she is for a reason. But I think she (like every human) has the right to her own physical and biological integrity. So much of her life is taken out of her hands. So much is controlled externally. Is it really worth the physical convenience to take away one of the last internally controlled abilites she has? Even if she'll never mentally be able to grasp this concept, she still has the right for others, especially her loved ones, to give her the benefit of the doubt and respect her autonomy as a human being.

There you have it. Very unorganized and unedited. But it's done.

Transport

From The New Yorker, April 16, 2007:

"A lot of people's view of Chomsky [re: linguistics] is of the person in the lead on the jungle path. And if anybody's likely to find the way home it's him. So they want to stay as close behind him as possible. Other people say, 'Fuck that, I'm going to get on the river and take my canoe.'" --Dan Everett

I suppose you can count me as firmly in the canoe. Or maybe riding an elephant. Perhaps just taking a nap while everyone else goes out scouting?

Shaun the Sheep

Good to see Aardman's back in commission [link dead] (and in particularly fine form) after the fire.

(Yes, I just quoted my own blog. I will now vanish in a puff of self important pretension.)