(Switching to “standard” pronouns in this post because this is a time when I really really can’t deal with flack for using nonstandard ones. For my friends, just substitute the ones you know I prefer when you read this.)
One of my cats has been diagnosed with lymphoma. She’s always been kind of runty— my housemate and I suspect she may have been the runt of her litter— and had some health problems, but she’s been getting more and more of them over the past year and with increasing frequency and losing weight. The vet is pretty sure it’s lymphoma because all the symptoms match and she has a mass in her intestines plus swollen lymph nodes.
We’ll know more on Monday, when she goes in for a lymph node biopsy and some ultrasounds. There is some good news in this. One of them is that lymphoma is one of the most treatable feline cancers, and with most types, the earlier you catch it, the better the prognosis is. Cats with it can and do go into remission, sometimes permanent remission. The other good news is that she is still eating, a lot, and she needs to gain as much weight as possible right now, before she starts any kind of treatment. (One of the problems my 18-year-old cat who died of chronic renal failure some years ago had, was that she had already lost a lot of weight before being diagnosed and starting treatment, and weight loss is one of the biggest hazards for cats with that illness.)
She’s a big fighter. She’s always been a big fighter. She’s gone through respiratory problems, recovered from a torn ligament and gone from walking around on three legs to tearing around the house on four, has a deformed vertebra in her spine and something like minor hip dysplasia but it sure doesn’t slow her down, etc. She tries to bring home lizards half her size (generally playing dead, and we thank her very much for trying to help feed her human family). She’s a cat who absolutely embraces life and all the fun things in it.
My housemate is very close to her, and she’s really more my housemate’s cat than mine. Not only are they very emotionally bonded, she helps out my housemate with her own health issues— meowing and walking on her chest to wake her up if she’s showing signs of getting sleep apnea so she won’t stop breathing in her sleep, or if she’s showing signs of refluxing in her sleep.
The cost is going to be a problem. I have savings accounts that I can draw on, and so does my roommate, but we try to be careful about those because jobs have always been an on-and-off thing for both of us due to disability issues. There’s a chance I might be able to get a long-term one lined up later this year or next year, but I don’t want to hang my hopes on anything before it comes through for sure, and I’ve been burned in the past by jobs that never materialized. Anyway, the thing is, because of all that, my housemate has set up a fundraiser. (The name is a pseudonym because she doesn’t like to use her legal name online for some very valid reasons, but any money donated from it will go straight to her bank account.)
We don’t expect to raise anywhere *close* to the $5000 estimate, so don’t think we’re asking for thousands of dollars or anything— it’s more like “every little bit helps.” The $5000 is more like a worst-case financial scenario for the costs of tests plus treatment. (There was one story my housemate found online from a guy whose cat had feline lymphoma for five years before the vets finally caught it, and was successfully treated and is still alive. It cost him $7000 in the end though, mostly for tests.) If we do somehow manage to meet that goal and the total cost of treatment is under $5000, my housemate and I will do everything we can to refund some money to everyone who donated.
What will help most now is any spare money for the initial round of tests (lymph node biopsy, X-rays and ultrasound) plus emotional support from friends and reminders to take care of myself while all this is going on, because neglecting myself is not going to help her. And this doesn’t mean I won’t contribute what I can to other signalboosts, too. But I think health treatment for companion animals can be every bit as important as it can be for humans, and is especially important when the animal in question serves as both emotional support and health support (in whatever ways they can) to a human.
Posting without comment bc I don’t know much about it.
marginalized people in bodies that do not face that oppression is, like, a on-going conversation in multiplicity communities. i don’t know of anyone who would pull something like anon’s example; folks are usually more respectful about it, when they have the courage to bring it up at all. (I mean, for starters, claiming ‘well my headmate is X’ is essentially the same as ‘my friend is X’. it’s more along the line of ‘hey, I’m in a body racialized as X, but I’m Y, so??’)
of course anon is precipitated on the idea that we’re fake anyway. it’s a bit hard to actually discuss these higher level issues when folks only ever bring them up to talk about how us non-DID multiple systems are terrible people
(and conveniently ignores systems where headmates have privileges where the body doesn’t seem to. oh, right, because people don’t actually care about this as a real phenomenon that happens.)
Yeah, this is a complicated issue. For us, we’re the ones who are marginalised in everyday life (PoC and trans body), but we have people in our system who have more privileges (white or cis people, for example). We HAVE seen a few systems with stereotypical people of colour running around, but they’re a minority (no pun intended).
We have a few articles about it (from both the perspectives of someone with more privileges and a marginalised person) on our website, actually.
"BECAUSE SOMEONE MIGHT MISUSE IT!" is a completely shitty reason for forcing people to thought-police themselves, to never even think about, explore, or investigate certain aspects of their identity, their life, their family, and/or their most fundamental experiences of the world— things that, in and of themselves, are completely harmless the vast majority of the time.
The fact that a minority of people have misused certain things, even if the misusers have been vocal, even if they have done concrete and undeniable harm, is still not a good enough reason to bind people’s minds in chains and cut them off from avenues of thought that could be anything from useful to profoundly and positively life-transforming.
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 colour 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 centre, 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.)
This frustrates us in the plural community, too. So much. So often.
It’s not always over negative things, either. It’s not always about seeing people do pseudo-ally concern troll snark at others for doing things they declare “real people with DID don’t do,” like using terms like “multiple system.” When, if they had ever actually read the clinical literature that formed the basis of the modern concept of DID, they would know that the term originated there in the clinical literature and the case studies, journalists routinely used “multiples” as shorthand for “having multiple personalities” as far back as the early 80s, etc.
Sometimes it’s about seeing people going through the same discussions, theorizing the same things, that we and our friends were doing ten years ago, and often coming to the same conclusions. And that certainly doesn’t *offend* us or anything, but I have to say, after a certain point it really is just reinventing the wheel, and people could save themselves a lot of time and energy by looking at what people had done in the past, the discussions they’d had and the conclusions they’d reached. We benefitted immeasurably from having “mentors” in the community early on who knew history we didn’t and were willing to share it with us, and in return we shared the research we’d done into things like 19th-century cases and so on.
And yeah. The frustration of seeing how history seems to be slipping away like sand through your fingers can be almost crazymaking. A rich history that’s still immediate, real and vivid for you— the good and the bad of it, the ego clashes and the friends you lost and the fire-forged, steel-solid, lasting friendships that came out of it— but might as well not exist for so many other people nowadays, even as they engage in the same battles and throw the same arguments around that were used 10 or 15 years ago. And the fear that there might come a time when no one will remember this stuff at all, any more.
One of the reasons we keep mentioning the Anachronic Army and Dark Personalities here is because they did so many important things for plural systems online in the late 90s and early 2000s, things whose importance at the time absolutely could not be understated. And nowadays, they seem to be forgotten by everybody except the few others from those days who are still around. For a lot of systems, they opened the doors to talking about things that are widely mocked nowadays, that people think are a new thing or a “Tumblr thing” (or a “Livejournal thing” before that— the “discoveries” and mockery by snarkers and trolls came in successive waves too; this is at least the third wave of it). Nonhumans. Fictives (even if they didn’t call themselves that then). Introjects (what both fictional and “real life” people in plural systems were more often called back then). Having your own world beyond “a safe place for all the alters to interact,” places with their own countries, cultures, geography, politics, etc. And we remember the snark for it they got back then, too.
We remember when nobody believed them when they said there were around 5000 people in their system, because “no one could possibly be abused that much”— when not only were they saying they hadn’t split from trauma even though they had experienced it, they actually were heavily involved in promoting the “empowered multiples” concept in the early 2000s. They didn’t invent the term; we knew the system who did, at one point, but we don’t know where they are nowadays. But the Army wrote some things about it which made them a very controversial presence in a lot of communities, because they made it sound like being empowered was mutually exclusive with being trauma-split, and then when people began getting upset at this because their systems had originated from trauma but they felt they met all the criteria for empowerment nowadays, as adults, the Army had to go back and revise what they’d written about it.
We remember when they explained that for them, people coming out to do various things throughout the day was just kind of like bees going in and out of a hive. We remember them saying that their memory continuity actually wasn’t very good, and that they had to keep an extensive planner with lots of notes so that everyone who came out would know what day it was and what they were supposed to be doing at any given time. We remember people telling them stuff like that they were “making a mockery of mental illness by treating it like a fantasy game” anyway, even as they talked about things like eating disorders and sexual abuse. We remember the flack they took— an unbelievable amount of flack, in communities like Divided Hearts, which no longer exists but used to be *the* online MPD/DID support community— for having vampires and demons in their system, and how they got told “you must have had satanic ritual abuse and repressed the memories of it.” We weren’t actually there for the founding of it, but we know through other people we met back then that all the stuff like telling them “you must have had SRA” was the main reason they founded the Dark Personalities mailing list.
That mailing list was an absolute watershed in the community at the time. For one, it was the first absolutely uncensored list that had ever been created for multiples— every single other one online at the time demanded that you stick to a very rigid system of trigger warnings, “spoiler space” (blank lines left before potentially triggering material) and splats (replacing letters in words like “abuse” or “rape” with * so they’d become “ab*se” or “r*pe”). It wasn’t that the people who flocked to join the ML because it was uncensored had no triggers— in fact, it seemed to be routinely assumed even in “empowered” spaces back then that everyone had abuse-related triggers. It was just that many of the list members had been the targets of dogpiles and beatdowns in other communities for trying to talk about things they thought were non-controversial, and getting attacked by people screaming “how dare you trigger me with that, you horrible asshole.” Think of something nice— anything— and chances are that someone somewhere had declared it was one of their mind control triggers. Flowers, carousels, stars, trees, the colour green— all of those were banned discussion on various lists, messageboards and IRC chats, or could only be talked about with trigger warnings, splats and spoiler space, because people declared that they remembered them being mind control triggers.
But it wasn’t just about being uncensored. The gist of Dark Personalities, up till a certain point, seemed to be “if you feel like your existence is anathema in other multiple communities, then come here.” People flocked there because it made them feel, for the first time in their lives, that they had the right to exist as exactly what they were— even as things they hadn’t had the courage to tell their therapists. The specific term otherkin wasn’t always used on the list, but there were lots and lots of nonhuman system members— not just vampires, demons, werewolves, etc, but elves and fae (we remember a time when it seemed practically trendy for people to have elves and fae, or fae-like beings, in their system at one point), angels, aliens, dragons, gryphons, furries/anthropomorphs, and various kinds of nonhumanoid animals. The Multiple Code, created in 1999 or 2000 by a system called the Consortium, had code tags for virtually every kind of animal and every kind of mythic being you could think of (and if you said your type wasn’t on there, they’d add it into the code).
These were things that some systems said they were afraid to talk about to their therapists— afraid that it would be seen as unhealthy, delusional, more splitting, more dissociation, etc (and judging from our experiences, it might well have been judged that way). Some people went to therapy amd talked about things like abuse and PTSD and dissociation in all the “expected” ways without ever mentioning to their therapists that they identified as nonhuman.
What really got us into the community and exchanging ideas with other members of it, rather than just standing back from a distance and watching, was a spinoff of Dark Personalities in 2001, called “Other Worlds,” that was specifically for discussing the subjective worlds people experienced in-system. Originally these kinds of worlds were generally referred to as inner worlds, but there were some systems who said they were offended by the use of the term “inner world” because they didn’t believe their worlds were internal— that they had some kind of objective existence outside of their heads— so the term “other world” was coined instead. There was a system called the Myriad who used to have a page where people could submit descriptions of their own system’s worlds, and we knew someone who got upset when they led it off with “this site is dedicated to the beauty and intricacy that minds are capable of,” because they felt that implied their world and everything in it were the creation of a single original person’s mind and they didn’t believe that it was.
Then there were other things, other blunders that we ran into along the way, communities that didn’t work out, and the only reason we don’t feel like they would be best forgotten was because some of them were kind of case studies in “how not to do it.” We haven’t talked much about a group called Pavilion that we and a few other plurals tried to put together in 2002— it was meant to be an activist group, specifically an anti-defamation group. On one of those lists we were on, someone got a discussion started— I don’t remember who, it might even have been one of us— about how plurals needed an equivalent to GLAAD to monitor media portrayals and write protest letters every time a bad one came up. I wouldn’t say we exactly agree with that idea any more, but the idea of having something official and a movement appealed to us at the time, and gave us a feeling that we weren’t helpless.
Anyway, though, Pavilion went completely in the wrong direction, partly because it became about micromanaging people’s language and ideologies and prioritizing this above actually making clear, concise statements about what we wanted and how we wanted the treatment of plurals to change, in ways that mirror how we see a lot of Tumblr communities going wrong today. And we want to tell them “We’ve been here before. We know why this doesn’t work.” We want to talk about exactly how we, personally, messed up in that whole ideal of “trying to create a better future for plurals.” But sometimes we wonder if there’s even any point to it, given the incredibly tiny number of people who seem to remember it ever existed at all, let alone the mailing lists where the discussions that led to its creation took place. Would anyone read it? Would anyone care?
We never felt like any specific community was “our home” either. But there were some places we invested so much in, whether we regretted it later or not. Other Worlds, and its later incarnation as a private invite-only ML. Pavilion. Various communities on Livejournal, but *especially* lj-multiplicity, where even though we’ve had mod status there since 2004, we let ourselves fade away from it and other people assume our role in importance, for complex reasons it’s hard to describe (but one of them was realizing how we’d failed in several instances to protect people from bullying, and lost the trust of people we really wanted to work with, and we aren’t sure how we can ever get it back now).
And we wonder who else, apart from the people we met then and who are still active in the community, remember systems like the Army, the Consortium, Shaytar, Phoenix Household, the Myriad, Indigo Changeling, Firewheel Collective, the Jin’tari and House of the Moon. (People gave their systems names like this all the time in the late 90s-early 2000s era. It was very common. Some people actually spent a lot of time deliberating over what to call themselves, when they saw that everyone else seemed to have a name for their group.) Or the Vicki(s)’ Midcontinuum Page, the original concept of which led, through various discussions in various places, to the “median” concept that some people still find useful today. Even systems who are still around somewhere online and still have websites but got burned out on activism or busy with other life things— the Shire, the Blackbirds, Lemarath, Netdancer. We didn’t always agree with what they said, but their ideas were, at one time, very influential to a lot of people. We still see people link the Layman’s Guide to Multiplicity and wonder if the people who read it know or wonder anything about the real people, the real lives, the real (and often tumultous) history that went into the making of it.
(We remember all those people you mentioned in your post except for Crabtail and The Dolphin, for what it’s worth. As in, we specifically remember them for what they did in the autistic community, even if we were only watching from a distance back then.)
The extent and importance of what’s forgotten can be terrifying. It has real negative consequences to real people, when the reasons for things are forgotten. We didn’t think people would ever forget the recovered memory debates and the therapy scandals of the 90s, but they have, in a way that seems almost surreal to us, as if we fell asleep and woke up in an alternate universe where they never happened. Those things are the main reason that no highly respected researcher can get funding or approval to do serious research on DID or any other form of plurality nowadays, not even in the context of trying to see if there might be some genuine neurological difference between plurals and non-plurals. They are the main reason that DID has essentially been reconceptualized as a thought disorder even though it’s still classed as a dissociative disorder, the reason that the one remaining psychological society exclusively dedicated to studying dissociation stated in the early 2000s that we aren’t even fragments of an original person, we’re just one person’s delusions of separateness.
(And when you dig into the history of the doctors who came up with these ideas, you often find some really ugly things, and ideas they held that give you serious pause about their credibility. And other weird things like the fact that Frank Putnam, who used to be a “big name” in MPD/DID treatment, reported several cases of multiples who hadn’t been abused, but then never followed up on them— he basically tossed them out like they were junk data from a malfunctioning machine rather than human beings, rather than something suggesting the phenomena he was looking at might be much more complex and varied than he or anyone else had ever assumed them to be.)
And those little communities, the ones that are everywhere but don’t have Big Names. We could also write about how the term and modern concept of soulbonding originated in one of those little communities and spread from there, how we were there when it happened, how surreal it was to see it go from what we thought was a placeholder word to being something that was treated as practically official. We remember when the soulbonding community crossed over with the plural community, and our role in it, and what we now regret doing back then, too.
People everywhere, holding these little pieces of experience with them, pieces of history, pieces of their lives, that assemble into an incredibly complex tapestry. Something that can’t be boxed into any reductionistic model, when you start weaving them all together and seeing the unexpected connections between things and the infinite number of stories in it and how it connects to the stories of so many other communities, so many other people, to the rest of the entirety of everything there is. It’s not just sad to forget them; it’s not even just dangerous. It’s that you can’t possibly have anything close to a comprehensive view of what you’re looking at if you don’t look at how the stories of the people and communities that exist today are woven into the stories of the past and impossible to detach from them, and how they’re woven into other communities and their stories, and into everything else out there.
(…it took me hours to write this and get it into a form I was comfortable with. I think that’s another reason why we seem to have “fallen out” of our position in the community— the services people use to write this stuff often move so much faster, and involve so much more interlinkage to puzzle out, than the mailing lists and messageboards we got used to. It sometimes makes us feel like we’ve been left behind, an archaic product of a past generation’s technology who can’t keep up with the new generation’s, even as we’re trying to let them know as much of our history as we can.)
-S. (some input from others obviously, very few of us write Tumblr posts entirely alone.)
We first became involved in the plural community in 2006/07, which is rather later than your system, but when we first read about plurality resources we definitely remember having read articles by other systems, going through them so we could find out as much as we could (and we distinctly remember reading articles by members of your system, Astraea, Lemarath, Blackbirds, Shire, Phoenix and Crisses, amongst various others) and ended up befriending systems who had longer histories in the community. So we know, and remember, and don’t want to see our community’s history forgotten. Communities have deep roots made of many people, with all their complications and good points and bad ones; they don’t spring out of thin air.
Something similar happened with the autistic community where we saw many of the people youneedacat mentions, like Denise (we’d known Denise on LJ for a while) and Laura (whose articles we’d read on autistics.org, one of the first sites we’d used to find out about autistic advocacy and activism), and of course Amanda herself.
(Source : queerjoys)
And those who say they are defending real people with disabilities, who aren’t “scroungers”, oblivious to how the scrounger narrative hurts all of us, and makes us all feel unsafe in an ever more frightening world. Admittedly there are those who abuse the system, and yes they are disablist too, but the way to deal with that is not to harm the many, many more people with genuine disabilities and chronic illnesses.