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Thursday, March 11, 2010

Today In Things Any Disability Rights Activist Could Tell You

So, people are nosy assholes. Well, let me amend that. Many people think that your body (or your loved one's body) is totally their business, the second that you (or your loved one) have something that sets you apart from "normal."

Things that set you apart from "normal" include: being pregnant, having a visible disability, having an invisible disability (and telling people about it), being mentally ill (and telling people about it), being fat, oh, and getting one of the "big" sicks (including our good friend cancer).

Let me tell you a little story.
Once upon a time, there was a social work student (we'll call him GleeviantD) whose father had just been diagnosed with cancer, and who was understandably a little "not so happy" about this situation.
GleeviantD kept having the seemingly innocuous question: "hey, how're you?" asked by people that were somewhere between friend and acquaintance, though a little bit closer to "fellow students." GleeviantD was starting to loathe this question because answering honestly: "not too hot, actually" was sure to elicit the "oh, not too hot!? what's going on?" which, when answered honestly, brought the conversation to a screeching halt because cancer sort of does that to a conversation.

GleeviantD though also didn't like lying or pretending that nothing was going on because a) he wasn't that sort of fellow and b) he had a sneaking suspicion that at *some* point he'd slip up when talking to these not quite friends, not quite acquaintances, more like fellow students, and mention the cancer and then the conversation would still come to a screeching halt, only now it'd be months later and he wouldn't be in control of when it occurred.

So GleeviantD did what seemed right. He decided to tell a whole class at once about the cancer, right after a lunch break, so that he could not have the same damn conversation 12 times. In fact, it was Gleeviant's fondest desire that he wouldn't actually have to have a *conversation* about it at all, that if the information was given in announcement form, and he phrased it just right, he could preclude a discussion of the matter entirely and just get on with the damn lecture.

I'm sure, gentle readers, that at this moment you are ruefully chuckling to yourselves that GleeviantD was so naive as to assume that making an announcement whereby he said "I figured I'd tell everyone like this because it's tiring have to have the same conversation over and over again" would actually forestall anything. If you aren't, you may commence now.

So GleeviantD attempted to figure out just how to phrase the announcement in a way that indicated a) he did not want sympathy, and was in fact starting to get a bit sick of it, b) he didn't want to talk to people about it, and was in fact starting to get a bit sick of having heartfelt discussions with people about it and c) he was handling it just fine, he wasn't about to break down crying right then and there and was planning on continuing to attend classes and such. Something along the lines of "so, just wanted to let you all know that last week my family found out my father has cancer. I'm going to be the one driving him to chemo, I don't think this will affect me coming to class or anything, but I wanted to let you know so that you aren't surprised if I'm not all "whee! awesome" when you ask how I am. I figured I'd tell everyone like this because it's tiring talking about it again and again." Not perfect, but pretty close to achieving his communication goals. Or so Gleeviant thought.

Immediately, someone across the room decided to offer this helpful bit of advice: "I know a naturopath who cured herself of cancer naturally. I'll give you her phone number for your dad if you want," while someone next to Gleeviant offered this: "Do you have support structures for yourself? If you're going to be supporting your father you really need to get yourself a support structure." Gleeviant realized he may have created a monster that he couldn't control and tried as best as possible to (politely) discourage this line of discussion by telling everyone "right now I'm doing fine, if I need anything, I will be sure to ask."

After class, both people who had earlier felt the need to speak up, again came to GleeviantD this time to profer their advice and sympathy personally.
This time, when one of them just about tried to force the number of the woman who cured herself of cancer using herbs into the hands of GleeviantD, he had to bite back his tongue in order to not tell her "thanks, but we believe in science as opposed to miracle cures, what with replicable results" instead saying: "my dad seems pretty cool with the idea of chemo so I'm just going to follow his lead."

The moral of the story: people think that other people's bodies are their fucking business. They don't care if you've just said "I don't want to talk about it" they don't care to find out *what* you are doing as a caretaking method before telling you what you should do (or should want to do), and they certainly don't seem to care that it's none of their fucking business to offer help, unless you ask for help.

Let's all try to be less like those people in the future, ok? Or else we'll make GleeviantD quite pissy.

This has been a "Today In: Things Any Disability Rights Activist Could Tell You"


  1. And this is why my go-to phrase whenever someone expresses to me - mind you, that's "to me" not "within my hearing", two totally different things, there - that they or someone they love are in some kind of difficulty, is "I'm sorry to hear that. Is there any way I can help?" And if they say no, I drop it, with perhaps only a reminder that "If you need anything from me, I'm here, ok?" and move the conversation on to other things. Thus allowing the possibility of assistance, if they want it, but centering their wishes rather than my preconceived notions of what would be helpful or not. It's not that hard, really...I don't know why more people won't adopt some similar model of interaction.

  2. That sound like a good policy.


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