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7:53pm
June 10, 2014
I think one of the weird things about the internet (I want to say this is tumblr specific, but I think it just happens faster on tumblr) is how people forget history of communities.
There’s a few communities I’m at the fringes of and in ones where I know the history I can tell it’s being forgotten because of how quickly people repeat it, or people declare they’ve come up with something new, when people had already been theorizing those things 10 years ago.
For communities I don’t know the history of, I keep seeing it on my dash, or I stumble on it when people link things and it’s always really amazing. Where these communities come from shapes the way they are now, and even if the past wasn’t perfect, ignoring or erasing it doesn’t seem to be the right thing to do.
I think you have to at least be aware of history, because people have been contributing good things, and sometimes it is important to understand why things came to be a certain way.
I feel very protective of the history of the autistic community. Even though it’s a community I’ve never fully felt at home in. I still feel like… I was there, I was there as far back as 1998 at the earliest, maybe 1999. And because I was there at the time, I had access to archives in ANI-L and the Usenet and Usenet-gated forums that went back to the early nineties and I read those avidly to find out the history of what had come before me, and I talked to people who were around when ANI and InLv were founded, and I was on ANI-L and InLv when they were The Only Two Mailing Lists For Autistic People, and I was part of autistics.org when it was the only massively-political website for autistic people, and all these other mailing lists through the years, and then came the web forums, and etc.
And that history is being lost and it frightens me.
It frightens me to see a tumblr “master post” on functioning labels that doesn’t mention where the name came from and doesn’t have posts from any of the people who originally hashed out why it was a bad idea. (A bit of this is probably ego on my part – I coined the term ‘functioning labels’ and I was the main person to bring to the attention of the autistic community how fucked up functioning labels were, and for a long time I was the only person railing against them while other people weren’t sure what the big deal was. I’m talking a decade or more. Many of the ideas that make it into modern posts about functioning labels were hashed out by me and my friends, people whose names are already forgotten despite the huge roles they played.)
It scares me how fast names are forgotten. Names are people. Real live people. People who sacrificed a lot.
My name hasn’t been forgotten yet but I see it fading – replaced by specific other people who fill the same roles I filled for the autistic community.
Not that I always liked some of those roles. I wonder how Amy Sequenzia feels about being trotted out every time someone needs to say “nonverbal people agree with us”? Because I felt very ambivalent about being put into that role. I understood that it was necessary for people to see that certain political viewpoints were not limited to people commonly described as high-functioning. But sometimes I felt like my entire worth to the autistic community was a token LFA. Even when I was explicit that I rejected functioning labels, which I believe Amy has too, we’re still token LFAs some of the time, as seen by other autistic people anyway. People stopped using my name so much when it got dragged through the mud, though, and then that felt like a betrayal. I heard people say “Don’t mention Amanda Baggs anymore, she’s too controversial,” and that cut me to the core. Because these were people who knew I was being relentlessly bullied, and somehow being bullied meant that I shouldn’t be mentioned anymore, because people might believe what the bullies were saying about me.
Meanwhile, as I watch myself fading, I see people I looked up to whose names have already faded. People who did really amazing things, made really amazing sacrifices, nobody knows their names anymore.
Frank Klein? Laura Tisoncik? Denise DeGraf? Crabtail and The Dolphin? Cal Montgomery? Anyone remember them? And I mean, remember them for their contributions to the autistic community. Not remember them for other things. (Some people know Laura is my power of attorney for healthcare. That doesn’t count.) There are people I remember by color and shape and texture and movement, but not by name, so I can’t even name them here to ask if you remember them. You probably don’t, if you’re most of the tumblr autistic community.
I’ve long wanted to interview people from different parts of the autistic community’s history. Not just the big names. People who were there, that’s all that matters. People who agreed with what the community was doing, and people who didn’t agree, both. To get a sense of the history. And then publish it all in a book or a website or something. Somewhere where people can go to learn their history. Because a lot of people are trying really fucking hard to reinvent the wheel as far as I can tell. And a lot of people are using concepts made by other people without crediting the people who made them in any way.
And I didn’t used to understand why credit mattered. But now I do, sort of. It shows your tie to the history of an idea. I don’t think it always matters. But I understand why people get frustrated not getting credited with certain things. That “functioning labels” thing hit me hard. My name not there, none of my work there, lots of people saying things, including specific turns of phrase, that came from either me or specific other people who worked on this stuff.
And there have been several times when horrible events have split the autistic community apart. Needless events. Stupid events. Events that get forgotten every few years, and then repeated because people don’t remember them. They usually involve egos clashing in a bad way. Sometimes it’s egos on both sides, sometimes the egos are mostly on one side (but try to make it look like it’s both sides). But the destruction is always awful and pointless and leaves people who needed these communities, distraught. I often see these conflicts coming, but I’ve long since given up warning people. Sometimes I warn people who’ll be on the sidelines, to stay away, keep their distance, don’t get involved or it will be worse for everyone. But the closer you get to the center, the less any warning will do any good.
The last time I tried to talk at length about this stuff, I was angry at someone. I was angry at her for pontificating about the history of the autistic community when she hadn’t bothered to learn anything about that history. And she got angry at me, because she thought I was acting like the autistic community is some kind of exclusive club with membership requirements. But that’s not what I meant. I just meant… there’s an element of respect, when you come into a community, and learning its history can be part of that respect. And dissing its history without even learning that history is just a very WTF thing to me. I’d jump at the chance to criticize the early autistic community on so many different levels, but I have to learn about what I’m criticizing, otherwise I’m just guessing, and guessing based on stuff that gives the wrong impression as often as not.
Forgetting your history is not good, in so many ways.
And I feel like as the original autistic community is aging, it’s a matter of time before some parts of our history will be lost forever, and that will be a tragedy for all kinds of reasons.
(Note that when I talk about “the autistic community” in this post, I’m talking about the mainstream of the autistic community. I happen to believe that there are autistic communities everywhere, that nobody knows about because they’re not Big Name Autistic Communities. But here, I’m talking about some specific communities that were tightly interrelated and do form an unbroken history from proto-ANI to the present.)