Oh now I’m really mad!

I’ve been surfing by some blogs about Ashley X and the ethics around it and holy shit! Some really good stuff from other disability rights folks and similarly educated and aware people (Gimp Parade, Planet of the Blind, Definition – A Feminist Weblog, Did I Miss Something) and a hell of a lot of outright hatred towards the intellectually disabled from a lot of people in surprising places.

I like to pretend for long stretches of time that people don’t hate folks like my sister, but they do. And as much as it hurts, as fucked up and downright evil as it is, there isn’t a lot I feel like I can do. I have been as close as you can be to someone with an IQ of 23 for 28 years, and I know that she is completely and fully human, like all of us. She has feelings, she has memories, she has preferences around movies and clothes and foods. She even has crushes. She went through a horror movie phase when she was fifteen like any other teenager. She has a personality, she’s funny and she will let you know when she thinks you should just fuck off and leave her alone.

But since she can’t communicate like you or I, she can’t jump on the web, start her own blog, and tell people that this case is a malevolent step towards eugenics.

It also says a lot about disability and sexuality.

I also have a brain related disability, I’ve got bipolar disorder. It’s a disability, and I’ve had it forever, and I’ve compensated and found ways to manage it. If my hunch is correct and people still equal mental illness with mental retardation, then I imagine a lot of people would think “Dear god, if I had to live like you I would kill myself!” And yeah, finding out for sure I have manic depression was harsh, and I did think about suicide, but for some really specific reasons, mostly involving the treatment of people with my particular disability. But really, I’ve never known any other way of life. Emotional extremes and voices and a host of other symptoms are just part of my routine, just like taking morning medication and evening medication and having my blood levels checked have become part of my routine.

I think having normalcy as much as possible is important for people with disabilities. I have trouble with large crowds, but I still need to go to grocery stores so I go at hours when the crowd is thinner. I will never be able to go to Superstore for groceries, but then I don’t really think a gargantuan store like Superstore is normal anyway. I know for my sister anything that happened in her life that was a normal part of growing up and aging was really important to her. When she got her period and I was still a teenybopper, she was very smug because finally she had beaten me to one of the milestones of female life. She was very aware of what other people her own age were doing. And like I said in an earlier post, she does very much have a sexuality. And that is completely normal to any person, and something she is completely entitled to. So what if someone else is not going to benefit or participate in her sexuality, it is still valid to her life, and it still has meaning for her.

My own experience with being disabled and still a shamelessly sexual person is from when I was in the hospital. There were a lot of things going on in the interactions between myself and the staff, related to gender, queerness and race, but the creepiest by far was the treatment of my sexuality. Any romantic or sexual feelings I had were fodder for appointments with my pdoc, and being humiliated over and over under the name of psychiatric care for having crushes was pretty demoralizing. I wasn’t running down the halls masturbating, I was just giggling about cute girls.

The impacts of psychiatry on sexuality doesn’t stop there though. Most psych drugs also have a “side effect” of eliminating libido and/or the ability to achieve an orgasm. It’s called a side effect, but some in the anti-psych movement say it’s a deliberately created symptom. One drug I was on wouldn’t let me have an orgasm for about eight months, which was so unbelievably frustrating. Of course going to the doctor to complain about this wouldn’t do anything, because I was making “progress” in other areas, like not uncontrollably crying in a phone booth.

A few decades ago I probably would also have undergone an unwanted hysterectomy. In another time period I could also have been at risk of a clitorectomy in case having sexual sensation was adding to my psychiatric condition. In other times I would be murdered by the government. My aunt went through memory erasing ECT in the 60’s. And in contemporary times if I act in an unusual fashion I’m at risk of having to spend between 72 hours to 30 days in a psych ward under very strict conditions until other people decide that I am normal again. I had a friend in the hospital who was on so many medications he was unable to ejaculate, and it was one of the things that upset him the most.

People don’t like the idea of disabled folks having sexuality. It creeps them out for some reason. I remember one time in Life Drawing class at Emily Carr we had a model who was a quadraplegic come in. The professor chose him so we would be able to draw people with different body types. He was talking to us about his life as a disabled guy and she was fine with that, until he said we could ask him how he has sex, which made her really uncomfortable and she asked him to just be quiet and let us draw him. It was really strange. Anything else about his life was fine for discussion, but having sex was certainly not.

One more thing I’ve been thinking about the Ashley issue is this: all of those surgeries are pretty hardcore. Removing a uterus itself is a major surgery, and takes a year to recover from. From my experience with my sister, I know she has a terrible fear of doctors and hospitals. She gets so upset and even getting her teeth cleaned and fixed involves putting her under general anesthetic. I know there’s a possibility that someday she might have to undergo some kind of surgery, but based on her fear of hospitals and the fact that a major surgery would make her really unhappy and traumatized for a long time while she recovers means our family would only put her through that if medically necessary. I hate to think of what Ashley would have been feeling going through a breast removal, hysterectomy, and appendectomy.

The fact that these surgeries target her sexuality specifically also makes me wonder a few things. They say that they’re afraid of her being raped. Well, rape is a violent act directed towards someone’s sexual self. Given that definition, how can we honestly say that these surgeries are not a form of rape?

One thing Ashley had in her life that was like the rest of us was the ability to grow up into a physically adult woman’s body. And now she doesn’t even have that. And people are celebrating, even though it’s given her an entire new layer of disability to deal with. Her parents have known her for nine years. Who she is today isn’t going to be who she is 10 years from now, and like someone else said somewhere, it horrifies me to think that one day she’ll realize her parents kept her from ever being able to look like an adult.