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1:11am July 5, 2013

Stop. Just stop.

If you are a disabled or chronically ill person who makes the choice not to discuss it in public, that is your choice. And it’s your choice to deal with the consequences of it, including people not necessarily understanding what you’re going through. Revealing yourself or not revealing yourself each have an up side and a down side, and it’s up to you to figure out what you want to say, or not say, about yourself.

But.

Don’t rag on people who decide to discuss their illness publicly.

Don’t throw every stereotype at them that the rest of society does. That they are somehow being publicly indecent, like flashing people in public. That they are only doing it “for attention" (only someone with no experience of the crap you get for being visibly ill or disabled could ever imagine that the attention you get I’d good or worth it). That they aren’t suffering anywhere near as bad as you are, do they should just shut up.

People are public about these things because they are reaching out for support. Because they want to change a society that does say being public about yourself is a form of public indecency. Because they want people to understand what they are going through.

And we get a lot of crap for it already without our fellow disabled people turning on us for it.

I remember once reading a book review by an autistic guy. He was happy that Donna Williams was finally refraining from writing what it felt like to be in the middle of a shutdown. He said shutdowns are private moments and she had no business being public about hers.

I talked to him about it and he really did believe that there was something wrong with publicly discussing shutdown. I could never get a good reason out of him. He made it clear he considered it kind of gross, like most people think of public nudity. And undignified. Everything nondisabled people are always trying to teach us about being disabled. Except he was autistic too.

Thing is. Without Donna Williams writing publicly about what shutdowns feel like, I’d have had a lot more trouble understanding my own shutdowns. By writing about what it’s like to experience various facets of autism, autistic people hello other autistic people understand ourselves.

It was things like that that drove me to learn to describe lots of aspects of my own autism, so other autistic people would be helped by it. And judging from the responses I get, loud and lots of people have in fact been helped by my self descriptions.
And yet other people have accused me of being selfish and self centered and attention seeking for trying to describe so much of my life in order to help other people like me.

Some of them are autistic people who take a perverse pride in never talking about their own autism to anyone.

Which is fine. That’s a choice you can make. Where it gets perverse though is when you start lording it over people who do describe their experiences. As if you’re better than them. As if describing their experiences as a disabled or sick person is the equivalent of taking a shit on a public sidewalk in the middle of Main Street.

If you don’t want to reach out to other people that’s your choice. Buy don’t even think of treating other disabled people like crap for making a different choice. Or worse, accusing them of exaggerating or faking for attention.

And yeah you might have more severe problems than some people who are public about themselves. So what? Some people are always going to be more severely ill than others. It doesn’t mean you’re better than them because you manage to keep it to yourself while they discuss it in public. It doesn’t mean you win some kind of prize for suffering in silence.

(And it’s not really silence anymore, is it, when you show up, anon or otherwise, and start ranting about people who are more public than you? Because that’s kind of…public.)

This is in response to three different posts I’ve seen lately, by disabled or chronically ill people, castigating disabled or chronically ill people for daring to open their mouth about their condition in public. I’m sick of this bullshit. The choice to be public or not is personal, made for a wide variety of reasons, and isn’t generally about “seeking attention" or something. And being public is enough of a sacrifice without being attacked for it by people who ought to be on our side. Plus by doing this you might scare people away from seeking support they badly need. So stop it.