#hypergraphia

Chapter 18

Kann in einem unendlichen System mit unendlichen Querverbindungen eine U-Bahn verschwinden? Number 17 is travelling between the lines.

It becomes impossible for me to understand what even the point is of language. The more I try to correct, the less I make sense, even to myself anymore. And I worry that all the reasons people gave for not understanding me only served to make me more anxious and difficult to understand, even for people who wanted to make an effort.

I read things that Mel Baggs and other disabled writers wrote, and they're things that make sense with what I'm going through now. On the one hand it's validating to know I'm not the only one experiencing these things. On the other hand, many of those disabled writers are now dead, and the people who should be reading their words never have and possibly never will. If I send posts to people and they refuse to read them, and refuse to listen to me and what I can now quote from memory, then what would be the point of me writing or speaking at all?

I think a lot of people lose their voices and words this way.

I think a lot of people die this way.

Not because they're not articulate, not because they lack insight into what's happening around them, but because the people crammed in thickly around them are determined to misunderstand them, until the frustration boils over, meltdowns and 'behaviors' are had, and this is used as justification for chemical restraint, institutionalization, coercive control, and brilliant minds are vanished to silence their voices.

I don't want this to happen to me.

I think this is something that's been happening throughout the history of language and oppression to a lot of people, and it's a dangerous razor's edge to walk sometimes. Every word. Every facial expression. Every tone. Every movement. Every variation in volume. Where it's not merely about the perception of people in the immediate vicinity, but what they can write into charts and notes. What they can report to doctors, paramedics, agencies, therapists, and the sort of kangaroo courts that preside over involuntary commitment, guardianship, conservatorship.

Where anything you do or say or write, and even how you do it, can and will be used against you in the court of public opinion, so easily manipulated by those who can benefit from shutting someone up and away.

No staff have to be smart to do this. All they have to do is be more credible than those in their care. And this credibility is a function of their position. It's built into disability support services and welfare agencies, places and systems where we wind up when there is nowhere else to turn.

I live in an adult residential facility. When I was placed here, it was supposed to be temporary, to get me out of a dangerous shelter, to keep me off the streets and out of some inpatient situation. Much was not disclosed to me until after I was shuffled in. I am still legally my own person, and I'm alone.

The facility is getting paid over $10k a month for my board and care.

This facility has the highest restriction possible for a facility of this type, in order to be able to charge the maximum legal amount.

I have been here over a year. In that time I have not been able to access actual medical care.

Even in this expensive area, that much money a month could have paid rent, paid for a car and a printer/scanner, and paid for a graduate student from a nearby prestigious university to come over for a couple of hours twice a week to help me unfuck my life and actually access care.

When a business provides care for profit, they keep whatever they don't spend on those in their care. They keep whatever they don't spend on the staff salaries or training. They can hire people who don't even speak English, can barely read or write, and staff will be motivated to do whatever they're told by those who sign their checks. They see just how easily they could wind up in much worse jobs, working for people who haven't been groomed into terrified passivity, under the watchful metal eyes of Ring cameras in almost every room, whose footage is only accessible to the people signing the checks.

It doesn't matter what I say, what I understand, what I write. It doesn't matter what I experience.

All that matters is I have disabilities and I am poor. That is what is heard, instead of me. Like a loud, insistent, ringing alarm that drowns out my attempts to communicate. Like something that, once you know it, you can't ever un-know it, that undermines any willingness to understand, to feel respect for what I'm going through. Pity feels degrading, demeaning to put up with. It places me beneath the person feeling it, expressing it, exuding it.

It doesn't matter that I feel like a veteran of some of the worst shit imaginable, like I was born into a war on my very self, and I have largely had to fight and survive it alone.

Mel Baggs wrote about something -- I think sie called it the 'rule of two.' Where when there is just one other person accompanying you into a situation with a care provider, a doctor, someone in a position of power, then we get listened to more, treated a little more fairly. And the person doing the accompaniment may be mystified, if the expected discrimination and interpersonal badness doesn't actually happen. They may think we were exaggerating for dramatic effect.

But people thought that about femmes' overwhelming experiences of sexual harassment and assault, and Black people's overwhelming experiences of cop violence and harassment violence. It's not an accident that it mostly only happens when someone with too much power is alone with someone who is not considered a credible reporter of their own reality.

As a trans human I experience this also. As I child I experienced this with my abusers. And many, many, many disabled and chronically ill people experience this with care providers and caregivers, compounded the more marginalized and disbelieved we are in other ways.

I think there's a strong, strong tendency to want to differentiate and distance from people sharing stories of interpersonal harm. I don't think it's necessarily conscious, which is part of what makes it so difficult to interrupt. I think there's an instinctive, socialized, acculturated response that happens, in the knee-jerk responses people have to being told that a human is hurting another human. Interrogating details, heaping pity and unsolicited advice, a listener trying to feel safe again in their own experiences, in their own skin, in their own humanity. Trying to find reasons the victim of misfortunate brought it on themself, choices and mistakes the listener will of course never make. Never to live like that, or lose their job, or wear that, at that time of night in that neighborhood, with a person who in hindsight is easily evaluated as dangerous and harmful.

I don't know what to do or say about this. I think the more we ignore the reality that people don't have to mean harm to do harm, the more harm can proliferate. Like ignoring that termites can eat wood will wind up ensuring the house gets chewed to pieces around you -- like ignoring that black mold can grow in damp poorly-cleaned places inevitably ensures an equally unhealthy home -- ignoring the ways we all fuck up and fail to course-correct ensures that it's going to keep going, and going to get a whole lot worse, and eventually it won't be people making choices you're careful not to make yourself.

Eventually we will all harm others, and be harmed by others.

Denial is something that goes around and comes around. It seems like a harmless habit at first. But eventually you wind up dependent on so much denial, and so many people cooperating in that denial, that when some really bad shit goes down, you're alone.

And you're stuck in a place you can't leave.

And there's nowhere else to go.

And things are happening that are so bad that they are unbelievable, because everyone seems so Nice™ and everything looks so Pleasant™ whenever anyone with any power is watching. And the people who are saying that this shit ain't kosher struggle to string words together in a way that makes sense, and seem constantly afraid that if they speak up, things will get worse for them.

They seem, on the surface, quite Mad and unreliable. Paranoid, even. In spite of the fact that there are literal cameras watching them, and people 24/7 monitoring them and writing little notes in files that are kept under lock and key, that the subjects themselves can't see and can't contribute to.

And one of those subjects is you.

And people who don't have to live like you do tell you to be patient. Day after day. Week after week. Month after month.

They ask, over and over, if anything bad has happened. But they don't seem to understand or even believe the things you do say, or if they do, then what they do about it makes things even worse for you.

If you're lucky -- very lucky -- you have held onto a laptop computer, and have managed to stay off the worst of the mind-scrambling drugs by staying quiet and keeping to a minimum interactions with the people in a position to panic and administer those drugs. If you're very lucky, you have a lifelong habit of responding to confusion and anxiety by reading and reaching out online to find other people writing about situations like yours.

Unfortunately a lot of the people in situations like yours are just as disbelieved and anxious and afraid and wound so tight you and they set each other off all the time. It will be like interacting with other burn victims while still trapped in the burning house. You will argue over whose burns are worse and how far away you have to stay from each other, and who should get priority for any ointments and bandages hurled in through the flames. (Metaphorically speaking.)

You will realize just how many of you there are. And you will find writing by people who are now just charred skeletons, who never made it out. You will wonder how many others didn't have the great good fortune to have words to put to paper, who died voiceless, stories untold.

You will try to help each other, but there will never be enough soothing or healing or supplies or support to go around. You will wind up hurting others. You may wind up feeling just as awful as the people who are calling platitudes on the outside, telling you to just be patient, asking who set the fire, and not believing you when you tell them that the arsonists, wearing flameproof suits, are still wandering through the house setting and feeding fires.

They will tell you that those people are firefighters.

The arsonists will tell you they are fighting fire with fire.

This will seem like absolute bullshit. No one who's not an arsonist is coming into the inferno anymore, so there's no one to tell except each other. But it feels horrible to keep harping on it, so doing almost anything else, anything distracting, is essential so as not to just lie down and feed your pain-wracked exhausted flesh to the flames.

You will get really, really pissed about the trollish people who ring the house and mock you and others like you for 'letting' this happen to you. You will yell back sometimes, and they will become absolutely unhinged and go round up their trollish friends to investigate your entire life and say horrible things about your personal private business, both to you and everyone in earshot.

You will, understandably, be feeling a bit misanthropic and apathetic.

You will probably hate people who tell you that the only fire is a bad attitude, and that if you wanted to get up and leave, you could.

You will probably hate people who think you need a therapist to fix your way of thinking about and responding to being in hell.

On the bright side, you will probably come around to appreciate the really dark humor of the people you're burning with. Laughs will be your only morphine, sometimes, and they may sound maniacal, because you all need them so bad.

You will probably wonder if this is actually what Madness is -- pain whose context is not understood and experienced by others.

And if you are lucky, and have the capacity for it, you may read and listen to things Mad people have written and said through history.

You might come to think that the real madness lies not in your perception of what's actually happening, but the yahoos outside calling syrupy-sweet reassurances and platitudes in to all of you, chasing the denial dragon like absolute fiends.

You may wonder if there was ever a time when your world was not a house on fire, or if it was just a dream you once had.

You might write. You might sing. You might cry. You might rock. You might roll. You might sleep. You might even come to enjoy your nightmares, because at least they go away when you wake up into the nightmare that never ends, and they're a change of fuckery.

You may develop more of a taste for swearing, especially really creative swears. They will be honest.

You may start writing and be unable to stop.

You may despair, knowing that no one has the patience and attention span and desire to read that much anymore. Especially if there aren't any cat pictures to go along with it.

You may post it anyway. And include a cat picture at the end as a reward or apology for anyone who read all the way through. Gods only know what someone who read all the way through this is going through (as long as they're not out trollin' & hatin').

And even though you don't know them, and may never compare burn scars with them, or trade cool rocks with them, you'll feel love for them, as I love you, right now. And you'll hope, as I do, that your love -- so painfully necessary to feel right now -- is received with understanding, and can be passed on, as it was to me, as I pass it on to you.

You matter. Your voice matters. Your words matter. What you have to communicate without words matters. It really fucking sucks that you're stuck where you are, wherever you are. I hope one day you get out, and laugh in the rain, and cry in the sun, and do all the things you love and want to do. You are human, and you matter.

Here it is, your moment of cat:

So every January, @programmedradly and I go through the @ficwip list of year in review questions and pick 5 we want to answer, and 5 for the other person. This saves us having to answer all of them, and saves you having to read it! You’re welcome! Plus it’s more fun.

tw: puke/blood/vent art

venting art I made lately, I got hypergraphia lately (mental illness related) so I spend hours writing/drawing and not sleeping.