6:24pm August 3, 2013

➸ Disease Is Not A Metaphor

Illness is not a filigreed way to speak about things unpleasant and undesired, no matter how comfortable you may be with thinking of it in that way. You were not “€œcrippled"€� by debts, nor "€œparalyzed” by fear, nor was your Thursday evening movie “lame". You are not “€œblind” to the reality of the situation, nor “deaf" to the concerns of a close friend. You were re-entrenching able-bodied supremacy in language though, is there a specialized insult for that, taken from the lexicon of sorrow heaped upon people who are not yourself? No, there are not more important things to think about than words, because the things that you say are the substance of your thoughts, which become the things that you do and the biases you keep close to your chest.

“No there are not more important things than words, because the things that you say are the substance of your thoughts, which become the things that you do and the biases you keep close to your chest.”

And that sentence reflects everything wrong with a certain way of viewing the world.

Note I’m not just responding to the OP but to everyone I’ve seen talking about the issue.

First off, the things I say are not necessarily the substance of my thoughts. I’ve worked very hard to make them reflect my thoughts, but I started out with echolalia and I continue to use it as a tool in most of my communication.

Which means I use words for situations because I’ve heard those words used in those situations. Not because every word connects back to a thought which reflects my personal biases and guides my actions I can’t even imagine what it’s like to have every word you use reflect your thoughts. Or every thought make its way into actions, for that matter.

And some of the words chosen just make me go WTF. Paralyzed by fear? Paralyzed means unable to move, it doesn’t mean unable to move because of one specific medical reason. And the fight flight freeze instinct exists. Petite freezer from fear. They are paralyzed by fear. There’s nothing disability related here.

I’m comfortable with some disability metaphors and not others, I guess. But I really dislike this practice of finding every word everyone uses that can be remotely traced back to a meaning involving disability, and then claiming that to use that word reflects thoughts or biases that must be destroyed.

And I also really really distilled this idea that there’s NOTHING more important than words.

Really?

Disabled people are living, working, and going to school in 100% segregated environments every day. The rate of sexual abuse is sky high. People murder us and get away with it on a regular basis, and some parents are pushing for laws making it possible to murder their disabled kids. Our unemployment rate is higher than ever. Tons of us live in poverty. We have trouble getting access to medical care, and sometimes medical people try and talk us into dying. It’s difficult to find affordable, accessible housing. Lots of us are homeless. Lots of us need services and medical equipment and medication that we can’t get.

But there’s nothing more important than words.

Even if it was true that words are always reflections of thoughts, I’ve long had a problem with the approach that seeks to change people’s thoughts rather than their actions. I know, I know, thoughts lead to actions. But I still don’t think it’s realistic or even ideal to focus on words and thoughts so much.

As far as I’m concerned, people don’t need to change their words and thoughts, so much as they need to change their actions. I don’t care how bigoted someone is as long as they treat me right.

In fact, in the extreme example, there are instances where I would rather someone treat me with extreme respect, except for calling me a slur, rather than someone who doesn’t treat me with respect but uses all the right words.

And it happens all the time that people change their word usage but not their thoughts or biases. And while people who encourage careful language use have the best of intentions, I think the mentality of words being the most important thing, encourages people to change their words and nothing else.

One of the best examples I ever heard was when a person on the radio insulted certain (nondisabled) people by calling them “retarded”. She seemed to realize this was offensive. So she got flustered. And then said “I’m sorry, I mean mentally challenged.”

Basically, she thought the offensive part of her comment was the word she used, rather than the idea of insulting people by comparing them to people with intellectual disabilities. One of the clearest example I’ve ever seen of changing words without changing thoughts at all. Meanwhile there are people who would call people retarded as an antiquated medical term (and even apply it to people without an ID) and might even call me that, and many of them I’d find preferable to people who had memorized all the right language but used any and all of the terms they knew as an insult.

I’d far rather make a world where it was simply made to hard to carry out actions that harmed people, than try to change people one at a time by making sure they used the right words, making sure they thought the right thoughts, making sure everything happened properly because nobody would be thinking thoughts that would lead them to harm people. I think dealing with people’s actions is more realistic than changing their thoughts or words.

I was thinking of that while talking to a friend while I was in the hospital this spring. They were trying to persuade me to go home and die rather than pursue the treatment that ultimately saved my life.

And we were talking about how we wished there was a policy preventing them from doing this. And specifically, that they could think all the bigoted thoughts they wanted. We didn’t care. As long as they weren’t allowed to act on them. And that this was a very different approach than trying to change everyone’s words and thoughts.

When you change everyone’s words and thoughts, you have to wonder, which words and thoughts would become acceptable? Which are unacceptable? Who decides? There’s a lot of disagreement in the world on which words and thoughts are best. I certainly have no problem with a lot of the words objected to in this post. Does my opinion count more? Does yours?

Who decides? What happens to having a wide variety of viewpoints in the world, including bad ones, in order to figure out which ones are good? You’ll never get everyone to have a “good” viewpoint even if everyone could agree on what God is. And you might say good is respectful and not oppressive, but even within oppressed groups there’s disagreement over what it should be. And that’s as it should be. It’s not because some people have figured out the truth and others are still thinking backward thoughts, it’s because having a wide variety of ideas, words, and thoughts, is how the world works.

So I’m far more comfortable figuring out what actions hurt people and stopping prior from doing those, then tampering too much with words and thoughts. A small number of those actions will involve words, but most of them won’t. And those would be the words that really severely dehumanize people. Not just words that can be traced back to disability or some other oppressed group.

(By those standards, most words for rudeness, including rude, would be impossible to use because you can trace them back to words involving social class.)

Notes: