Friday, February 27, 2009

Perhaps, Most Likely

I'm not sure if I mentioned on this blog that I've started university. Anyway, I have. I'm taking a linguistics class and an English class.
In my English class, my instructer just criticized me for saying 'most likely' the author of one piece intended it to be interpreted a certain way. He said to state it as a fact, so it will be more convincing.
I'm not going to do that. I think it's wrong to pretend your opinions are facts. I can't read the author's mind, and say what he thought, and to act like I can seems to me to be a violation of that person. I am not Coleridge, Alice Munro, Ursula K LeGuin, etc. I can't know for certain what was in their minds when they wrote the pieces I've read. And I won't pretend that I do.
My professor says that everyone writing academically does this, and that if they didn't, no one would listen to anyone else and the fabric of society would be torn apart. (Yeah, right.) Well, I've read a lot of academic writing, and he's right in saying writing this way is common. So is, I think, the fallacy behind it, where your construction of reality becomes more real to you than reality itself, and you forget that you really don't know for certain that what you are saying is true - in fact, the vital difference between facts and interpretation. It's doesn't appear to be a mere convention used to make a point. People who write that way often act as if they honestly believe they know for certain what is merely conjecture. And I made a promise to myself that I would do my best to avoid being like that.
I'm willing to get slightly lowered marks for that. I don't think it's fair, it makes me very angry, but I'm not going to change anything by throwing a tantrum about it, and I'm not willing to give in either. It's not like I'm going to fail, either - I got 80% on my last essay.
I don't have any idea if I will be able to change this convention. It all depends on whether I become famous or just do my work and do it well with little recognition. But at the very least, I will stick to my principles.

Saturday, February 14, 2009

We're Not All Sexual

Many people have complained about the portrayal of disabled people as asexual. Although I really don't understand what it's like to have your sexuality denied and ignored like that, I do understand that it's not a good thing.
But there seems to be a tendency to assume either that disabled people in general (or in certain categories) have nothing in common with normal people, or to assume we're not really different from normal people - or only in superficial ways. In terms of disability and sexuality, this comes off as either assuming all disabled people are asexual, or assuming all disabled people are just as sexual as anyone else.
The latter assumption is what I see many disability rights activists expressing, when they talk about sexuality. They discuss sexuality as something universal to all human beings, including disabled people. Some acknowledge sexual differences such as being gay, but they still say that everyone has sexual feelings.
Well, not everyone does. Certain disabilities, such as intersexing conditions and autism, are associated with asexuality. Not every autistic or intersexed person is asexual, but a certain number of us are. We exist, even if your claims that all humans are sexual deny our existence.
It's especially bad when sex education materials do this. As a pre-teen, I got sex education that denied any sexual differences - even homosexuality - and left me confusing nonsexual liking for sexual attraction because I didn't realize it was possible for me not to have crushes on boys. I don't really blame my school for not telling kids about asexuality, because it's so rare, they probably didn't know about it. But there are sex education books out there for autistic kids that also suggest that everyone has sexual desires starting in puberty - and asexual people are not rare among autistics, especially autistic girls. There are also some autistics who develop their sexuality later than usual, typically in their twenties, and therefore are asexual as teens but not as adults. I'd estimate that at least a third of autistic teens will have no or very little desire for sex. A third of your intended audience is a lot of people to ignore.
And I think a big part of this is the idea that saying disabled people - any disabled people - are asexual has been portrayed as a nasty stereotype. Somehow, even acknowledging that we exist, that we aren't interested in that sort of thing, seems to be taken as denying that we're real people with emotions. Well, no, asexual people are not emotionless. We're not incapable of love, because love does not just mean sexual attraction. It's possible to love a close friend, a parent, a child, or a sibling. And that love is just as real, and can be just as passionate, as sexual love.
I don't think it's a bad thing at all to be asexual. In fact, I'm glad I am - it seems to save me from a lot of angst, since I'm not constantly looking for Mr Right. I just wish there wasn't this idea that sexuality is fundamental to every person. Our society is obsessed with sexuality, but we're disability rights activists, we're supposed to challenge society's assumptions.

Labels: , ,

Monday, February 02, 2009

Rights of Nasty People

Minna Mettinen-Kekalainen, a woman with Asperger Syndrome and amyotrophic lateral sclerosis, has finally been given the care she needs, after much protest. She is severely disabled and was cut off from home assistance, only managing to stay alive because her friends were willing to feed her (she needs tube-feeding).
In protest, she started a hunger strike, which she called off in order to stay alive (possibly she figured out that her starving to death wouldn't bother someone willing to deny her such basic care as tube-feeding and diaper changes).
So this one has a happy ending, at least for Minna (I'm not sure if there are others similarly cut off by this agency).
But some of the comments on her case concern me.

"I ... do fear that this will give her the idea that it is ok to treat others with disrespect. I don't fall for the aspergers BS, I think giving someone a label allows them continue with their behaviour - never seeking any sort of self improvement because it's 'just the way they are'. And right now she's got everyone wrapped around her finger."

"Trained or not to handle it, if she doesn't have the control to treat people with the dignity she expects for herself then they shouldn't have to enter her residence."

"Try being the health care worker who can't please.... Place her in a long-term facility and she will get what she needs."

Asperger Syndrome is not characterized by being mean and nasty to people, but by being literal and socially awkward. People who understand that the AS person is not intending to be rude are not going to find them very offensive - unless they're nasty as well as autistic, since after all normal people don't have a monopoly on that. And knowing how service providers often screw people over, I doubt Minna did anything wrong. According to her, she threatened to report the nurses because they weren't following her doctor's orders - something that could have been seriously harmful or even life-threatening, depending on the orders they weren't following. And given that you don't need to be very competent to get hired as a care provider, and the low pay means many care providers don't view the job as important, it certainly makes sense that they'd screw up or be lazy.
But let's say that Minna really is a nasty, unpleasant person, who was verbally abusive to her care providers. Remember that she is also a severely disabled woman, almost completely paralyzed, which means there's no way she could physically harm someone. Would her being nasty and verbally abusive mean that she deserves to die from medical neglect?
I don't think so. It's expected, if you work as a service provider, that you will be able to deal with verbal abuse. My mother, who works as a cashier, has dealt with nasty people and knows that her job requires her to stay polite and make a reasonable attempt to please them. She'll rant about them to her coworkers and family, that's just fine, but she has to deal with them. If she was not able to do this, she wouldn't have lasted long in her job.
I understand that some people can't deal with verbal abuse. I can't. And if I was applying for a job working with people, I'd have to learn to deal with that. Of course, few people would actually enjoy helping an abusive disabled person, but few would actually be unable to cope. Those who are literally unable to cope should either find another job or - if they are good workers in other circumstances - simply be assigned to work with those clients who they can deal with (just like someone who can't handle seeing naked adult men could work with a child, a woman or someone who can dress themselves and handle their own toileting). It might be possible to assign more workers on shorter shifts with that person, so each worker gets a break earlier. But it's not acceptable to deny that person care.
Much as many people would like it, being nasty and verbally abusive does not take away your human rights. And diaper changes and tube-feeding, for those who need them, are not privileges. They are rights.