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4:09pm February 7, 2012

The whole private means better thing

I just thought of a pattern I’ve seen.

When a bunch of people who know each other, on the Internet or otherwise, find out that someone they know has died of something that they’ve been experiencing for years. Like cancer. And nobody knew. Or even if the person hasn’t died, they find out about someone’s illness and that the person seriously regretted having to say it in public.

And the reaction people seem to have – aside from grief – seems to be more respect for a person the more secretive they have managed to be about it. (Although there may be anger if the person didn’t tell close friends.)

And… I totally think whether to tell or not to tell people is a personal decision and there’s no wrong choice.

But other people’s reaction to the choice to conceal things like that bugs me. It seems related to the idea that talking about terminal illness or disability in public is bad, sympathy-seeking, or unseemly in some way.

Which in turn keeps disabled or terminally ill people afraid of talking about this part of our lives in public.

When it’s really important that we do have a chance to do exactly that.

I remember reading a book review by an autistic man reviewing a book by an autistic woman. And he was relieved that in this book, she didn’t tell us what was happening inside her head during shutdowns. He seemed to regard discussing the internal experience of shutdown as akin to public urination.

But reading that author’s description of shutdown from the inside helped me understand myself, and I’m sure I’m not the only one. And it probably helped some people understand other people, too. And there’s an actual point to discussing these things.

One disabled writer once brought up the fact that disabled people don’t write about things that are more private, like needing help using the toilet. He thought that, in fact, our collective refusal to discuss these things could contribute to the situation of people who want to take their own lives once they reach the point of incontinence. Because so few people are out there discussing this as it really is, it becomes an imaginary boogeyman that terrifies people. So it may actually do our societies some good if those of us who are willing (and only those of us who are willing, of course), are out there discussing even the more private stuff, honestly and accurately.

But I just… feel really weird when I’m around people who think there’s something wrong with you if you discuss disability or illness openly. Or like there’s something better or stronger about people who hide it from everyone.