I’ve learned to sustain myself
In tiny drops of water
From oases so small
They’re invisible
To the naked eye
You flow over jagged rocks
Like a mountain spring
That reminds me
I’ve forgotten how
To be thirsty
The part of the redwoods we lived in when I was born are sacred to me. My best friend is trying to visit there. Too many feels.
Thank you world for dirt and trees and fungal mycelium an redwood sorrel and slugs and salamanders and the things beneath everything.
Don’t forget no matter what happens that the world is a place of terrifying beauty and depth and we owe a debt of gratitude for our existence.
These aren’t things anyone has good words for, even people with much better words than mine. But we need to draw strength from what is good.
And we need to put back into the world as much good as we can, precisely where we are needed, wherever that is, however strange or small.
And this doesn’t go away, no matter what happens, no matter what is done, what snow, what is ahead. This is both birthright and duty.
It’s important to find where we need to be. And then be there. Thoroughly be there. Do there. Whether it makes sense on the surface or not.
Sometimes we feel separated flailing in the dark. But each do exactly what we need to do. And underground our roots are deeply intertwined.
Disconnection is an illusion. Underneath our feet is more connection than most of us can imagine.
We are each in some way exactly what we need to be. We do best when we find that and deepen it and act from that depth.
The world needs you.
Our obligation to the world is unbreakable. So is the impossible level of love underlying anything we look at. These things are connected.
If you feel disconnected, look down. And down. And down. And down. You have roots in everything, whether you feel them or not.
These aren’t platitudes. This is a reality as difficult as it is beautiful. It’s also important. Especially now.
And there s strength and depth in places you may have never been able to look. You don’t have to feel it for it to be there. It’s there.
Quote from my friend, who took these pictures: “In the forest, yes, look up at the cathedral canopy, but also look down. Everywhere is alive.” She’s right. And it’s the life everywhere in redwood forests, my earliest home, that has taught me who I am, where I belong, and what being alive means.
I’ve been struggling with how hard it is to hold onto full consciousness that I’m a human being equal to other human beings.
And understand that this is confusing. So when I write about decisions I am making, don’t take them as judgements on people who don’t or can’t make similar decisions. And don’t assume that I am even totally certain I’m right — I’m pretty sure I’m right about the core idea, but the details are confusing as hell.
In a lot of this, I feel like I’m in some kind of freefall. People have dealt with similar things for a long time, and I’ve gone out of my way to seek them out and learn as much as I can. But a lot of the learning is necessarily by analogy. And there are paths I’m trying to take — I’m certain others have taken them before me, but if any of them were able to write more than the most cursory maps, I haven’t been able to find them.
Which is why it becomes important to record even my own flailing in the dark. Because maybe — it’s been the case before — maybe it will help someone who’s flailing around in here with me, perhaps freefalling in the same place but we’re all unseen to each other, only sensed indirectly.
I have been writing a lot of things, none of which are finished yet. I can’t really help the length. I’m sorry in advance to anyone who (like me, believe it or not) has trouble reading long things.
Also understand why I’ve put photos throughout this post in various places. Some things I can only say that way, and I find it important to remind people of there being physical real humanity behind all these words. The words are just an attempt to convey things that words can only point to without getting there. So you’ll also see things like this (and if I could do image descriptions I wouldn’t need the images — all I can say for any of them is that they show my face as I’m writing different parts of this, which by the way was not written in order):
Being sick is a weird thing. It renders me vulnerable to all manner of nonsense. But it also pulls down my defenses against reality. We’ve all got defenses against reality. I’m perhaps more aware of mine than a lot of people, but still can only pull them down at will for short periods of time. (We’ve also all got defenses against unreality — and those are incredibly important. Being sick makes it hard to defend against either one, so what happens is always a mixed bag.)
Right now can be almost unbearably painful. Because I am aware of my full humanity, or as aware of it as I can generally get. And that means being aware of how much of an unperson I am, and others like me are. And by the way — if you see me as a person because I’ve proven it to you, but people otherwise just like me who haven’t proven it are not people to you, I’m not actually a person to you either. Real people’s personhood is not conditional.
I’ve been thinking about a lot of things for awhile, a long while, and not been able to articulate a single one in a full post. This is the first attempt that I think will actually make it.
But what prompted this post in particular.
There’s a lot of people in my life who vary a lot in how much I’m considered a person to them.
There’s one person who, while they connect with me in certain areas of life we have in common, I’m still pretty clearly not a person to them.
I was thinking how they are a person to me. How I use the areas where we can connect to try to understand them. How I am always trying to understand other people. Not just intellectually but to have genuine compassion wherever thy are at and whatever they are doing.
And. Okay. I’m disabled. They’re either nondisabled or at least… not in a way I know of, and not in a way that puts them at the mercy of the systems I depend on for survival.
And the most common roadmaps followed by people in this corner of the online world, would tell me to just ignore our common humanity. To make things even more adversarial, more us-vs.-them, than they started out. To protect my own and to hell with everyone else unless they did exactly as I wanted and expected, even if what I wanted and expected changed constantly and unpredictably.
But that’s not a viable way for anything to actually work.
And also…
Okay one of my posts is about a concept I’m semi-borrowing from Madeleine L’Engle’s A Wind In The Door: Xing. In A Wind In The Door, there are evil creatures called Echthroi who try to X people — to erase their entire existence across time and space, at the deepest level.
And I don’t accept all the parameters in that book. I don’t think real Xing is possible. But I think people try to X people all the time. I think disabled people are highly subject to Xing and this is highly socially acceptable. I also think that even attempted Xing, whether small-scale or large-scale, is the worst thing a human being can do to another human being. And the fact that it’s socially acceptable in many contexts doesn’t make things better.
Xing is about trying to erase your soul, or pretending your soul never existed. It doesn’t matter if you believe in no souls one soul, many souls, you frigging know what I mean, the part of you most connected to reality, the parts of you that make you real, the seat of your personhood, whatever you want to call it. So please don’t bullshit me about my language being wrong or your own discomfort at what you see as a religious concept. These things are hard enough to write about without having to second-guess every other word I write.
Anyway, it doesn’t matter what your mind or your heart tell you. Your soul knows when you’re being Xed. And it screams. It fights to be taken as real. No matter what choices you make. No matter what cognitive abilities you have. No matter how emotionally anesthetized you think you are. Your soul responds.
And the thing about Xing is, it doesn’t just work one way. When someone tries to X someone else, or participates in Xing someone else (often as part of a larger pattern that guides their behavior, such as working at an institution), they end up Xing themselves. I don’t know how it works, I only know that it works like that every time. When someone tries to X someone, the only winners in the end are the Echthroi.
So my instinct towards compassion for people regardless of what they’ve done, is not wrong. And understand — by compassion, I mean love, I mean empathy. I don’t mean excusing people. I don’t mean forgiving people, although that can happen. I don’t mean putting me or anyone else in danger. I don’t mean sparing their feelings or avoiding the harsh reality of what they are doing. I don’t mean acting like compassion for them is more important than compassion for the people they are Xing. I don’t mean talking endlessly about how ~understandable~ it is for a mother to commit premeditated murder against her disabled child, how people are supposedly wrong to be disgusted and angry. I don’t mean ignoring who ultimately has power over who else. Don’t get me wrong here.
I do mean that recognizing our common humanity is ultimately vital for all of us.
And when I say that Xing Xes the Xer, that’s universal. So if I respond to a person who participates in my Xing, by trying to turn the tables and X her, then I am Xing myself as well. I lose touch with my own humanity. I lose touch with the humanity of others. If we, as a group, respond to the constant threat of being Xed by trying to X the people Xing us, then we are destroying ourselves. We are aiding in our own Xing. We are losing touch with the humanity of everyone, and this also means that when we are in positions of power, we will participate in the Xing of other groups of people.
And the only things that win in such a scenario are the Echthroi.
No amount of theory, rationalization, justification, will change this situation. This is a fundamental property of reality. Encouraging people to find elaborate ways to ignore that encourages people to inadvertently destroy themselves.
And these are things I found out when I listened to my soul begging not to be Xed.
None of this stops the fact that a struggle will have to happen in some form or another.
But it changes the shape of that struggle.
It changes what is acceptable and what is not.
Because I refuse to participate in the worst crime against humanity that exists. Even if it is a crime that will never be a crime, that can’t be legislated, judged, heard evidence for. It’s still real.
And nothing can get away from that. There are certain things that are just part of how the world works, and even if we can’t make sense of them, we can’t make them go away when it seems convenient. I say seems convenient, because I’m convinced that even when Xing people seems right, feels right, it’s never right, and will never solve anything for real.
I don’t know how to go forward.
I don’t know how to fight injustice without making it worse.
I don’t think there is or can be a formula or set of rules for this.
All I know is that my friend heard someone screaming for help across the street.
And they could not help this woman.
She’s in a nursing home.
My friend doesn’t trust the cops at all — but still almost called them to make sure this woman isn’t being physically or sexually abused.
And all I knew was I was suddenly terrified.
And I was reminded of something.
A woman in a nursing home.
She screamed for help every time I saw her. Stood in her room, alone, yelling “HELP! HELP! HELP! HELP! HELP!”
A worker at the nursing home felt sorry for her. Told me, “That poor woman, she has dementia.”
The worker was participating in that woman’s Xing the moment they made her situation one of sad inevitability, her cries for help solely the product of a malfunctioning body.
And I feared if the police went to that place, with this other woman screaming for help, they would possibly find no evidence of physical harm and would conclude “she has dementia”.
And I remembered the woman from my childhood visits to nursing homes.
And I remembered that she didn’t just have dementia.
She lived in a small room with nothing to make it hers.
Her door was open but she had virtually no human interaction.
And she lived in an institution. Institutions always X people.
So she was being Xed in so many ways.
And her soul felt it and responded. You could hear it in her voice. There is a sound to a soul that is refusing to be erased.
I don’t know — and honestly don’t care on one level — how much she understood intellectually. Whether she knew where she was. Whether she knew who she was.
I don’t have dementia. I do have wildly inconsistent cognitive abilities. And I do tend to become severely delirious if sick enough.
I have been in hospitals and been too delirious to know where I was or even who I was. I’ve had time drag to a crawl in such a state. And my only interaction — if you could call it that — was when nurses came in every few hours to switch my IV bags or sometimes clean me up. This was not actual human interaction. They were not acknowledging I existed.
And I felt it. My soul felt it. And my soul responded.
So I know that you don’t need to have enough working brain cells to rub together to create conscious thoughts, to feel when you’re being Xed, and to respond on a primal level.
This is the worst pain someone can inflict on someone else. And people do it to sick and disabled people habitually, put us in places that force people to do it even when they would not otherwise, and some form of this is completely socially acceptable in most cultures.
People act like I’m too stupid to know other people are even more stupid than me.
I think it’s pretty fucking evil to act like Xing people with cognitive disabilities doesn’t damage us or cause us pain.
I think this evil has become commonplace and acceptable. This does not make it less evil. Sometimes it’s impossible to evade a structure that forces you to at least partially participate in evil. But it’s rarely impossible to try to do as much good as possible.
And that starts with knowing we have souls and that we can suffer and that our suffering from being Xed is not a sad but inevitable result of having a disability. And that if we seem soulless and empty that is an illusion, and you can fight illusions if you know they are illusions.
What becomes horrible is when it’s too painful to know you have a soul and are fully human.
Because if you know — really, deeply know — that you yourself are human.
Then you can’t ignore the pain of your soul. You can’t ignore the contrast between what other people see and who you are.
And that can be dangerous.
It can be dangerous to feel, to act on what you feel, to yell for help or to lash out or any of the other things that feeling your humanity under onslaught can make you want to do.
It feels safer to become numb.
It feels safer to accept that you are not a person, or are only a partial person.
Some of us learn this very young.
And we participate in our own Xing.
And when you begin to feel — you can do things that put you in danger, that may even put others in danger.
Which is why some part of me deeply knows that the instinct to dig in, to make it us and them, to hate everyone who hates me, to X everyone who Xes me, to lash out in any and every direction… this instinct is wrong, it contains illusions, it is deeply understandable and deeply wrong and deeply ineffective but it can feel so right in the moment.
And as communities we sometimes celebrate and encourage that impulse. We nurture it and let it grow into something that is ultimately both evil and ineffective but that feels better than doing nothing and that is sometimes partially effective. But some part of it is doomed, it is dooming ourselves, it is dooming anyone we might have genuine power over, it is so very seductive and so very dangerous.
So is passively allowing ourselves to be subhuman or partially human, or acting like we must go through life never harming anyone on any level.
Giving in to that seductive impulse to X people, or the impulse to be so utterly passive we X ourselves, are not the only two options.
But the effective options… they’re confusing. There’s not as many roadmaps. There’s not as many people. They look different for each person. Nobody can do everything. Everyone has a part to play. Sometimes people do good things while doing the wrong thing. There aren’t words for these situations.
But as many of us as can, we have to try.
We have to grope around in the dark, to try to navigate this freefall, to find and create paths for each one of us.
It’s hard. And confusing.
And right now. I’m looking at you. Whoever you are. One human being with a soul to another human being with a soul.
I see you. You are real. So am I. We’re in this together.
Sometimes you need a reminder that each of us is a human being behind the computer screen.
I don’t know where I’m going. Where we’re going. But I know I have to try. I can’t accept any system that Xes anyone. Whether that system is an institution, or an attempted fight or philosophy for liberation. I can’t. I won’t. I will always try.
I won’t accept that anyone is soulless or empty.
I won’t accept that my soul always has to be filtered through an ego that distorts its intentions.
I won’t accept being Xed.
Which also means I won’t accept having to X anyone.
I can’t always resist doing the wrong thing. There will be systems outside me that push me in the wrong direction. There will be my own ego and illusions steering me wrong. There will be unintended consequences, both for good and for bad. But I can’t give up and act like that doesn’t matter.
If you are out there trying to figure this out, trying to grope around in the dark, I am here with you. Lots of people are here with you. None of us are alone.
And… sometimes I wonder if I’m crazy. Well I know I’m crazy in one sense. But what I mean is — my perceptions of reality, so few people voice these things, so many people participate in the Xing of me and people like me, that I wonder if perceiving our humanity and soul and everything is some kind of illusion.
And that I even wonder that — that is a symptom of how thoroughly fucked up and pervasive the Xing of people like me has become.
I’ll probably talk about my perceptions of other people in another post. That’s an entire topic in itself.
Also — people often think there’s something special about my cats. Because of the way they interact with people. Because of the way you can feel that they have souls.
There’s nothing special about my cats. I do my best not to X them. They don’t learn to X themselves. That’s the only thing different. You can’t always do right by cats but you can try as hard as possible.
I am like a cat who has learned to partially X themselves, but is beginning to listen to their soul.
One of the worst things for me is being conditionally a person.
It’s being a person because I can type in coherent English some of the time and people know it.
It’s being a person because I’ve displayed a real or illusory ability. And people just like me who haven’t — or who are assumed they haven’t, even sometimes have people deliberately cover up that they have — aren’t people. This is still Xing. And it gets really insidious when people go, “You’re not like them, and they aren’t like you,” as if they decide. As if, in the wrong situation, I am not somehow exactly “them”. Real people’s personhood is never conditional.
Or.
It’s people trying to make me a person. I’m a person already. You didn’t create my soul. You don’t make yourself better by going through the motions of making me look kind of real.
Or.
It’s people saying I’m a person. But not meaning it. Not understanding it.
Sometimes they gush endlessly about how I have a heart, a personality, but they treat me like a giant baby, and I am meant to accept this in order to make them feel better about themselves.
I can’t be that. I can’t accept that. My soul screams when I see it happening to other people.
You can’t make someone a person by celebrating that they are a mindless heart, or a heartless mind, or a bodiless mind, or a bodiless soul.
All of us have whatever is meant by mind, heart, body, and soul. We don’t all look the same, we are not all the same, but none of us are missing essential parts of our nature.
You don’t have to compensate for the the ‘missing’ part by emphasizing some other part. You don’t have to tell physically disabled people to ignore and disregard our bodies and cognitively disabled people to ignore and disregard our minds and autistic people to ignore and disregard our hearts and all combinations of these and more things. “You don’t have a mind but that’s okay.” “You don’t have a body but that’s okay.” “You don’t have a heart but that’s okay.”
No. it’s not okay. Our minds and bodies and hearts and souls may look different, may be different, but they’re not absent.
It’s not okay. It can never work. It is not the answer. It is not liberation. It is not freedom. It is not love. It is Xing in disguise.
I have to be a human being. I have to be a human being. I have to be a human being.
Being a human being hurts sometimes.
It cuts so deeply to watch yourself being Xed. To be isolated. To be expected to be grateful for being allowed to exist. To be expected to be grateful for Xing. To be expected to be grateful for partial or conditional personhood.
To experience this from people who are close to you, people who say they love you, people you love, people who love you in one way but not in another.
To have to figure out a way to accept the humanity of someone who won’t accept yours — without taking away from the magnitude of the horror they are inflicting upon you.
To feel like you are doing this alone, or nearly alone.
To struggle into consciousness, struggle into awareness of your own reality, struggle to maintain that awareness even when every instinct tells you to shut down. To struggle to maintain awareness of who you are without going crazy in a world that tells you you don’t exist.
I say it again — I’m here with you.
I am a person. You are a person. Whoever and whatever you are.
I am looking at you to tell you that I am real. But also — this is irrevocably linked to that — everyone is real. Everyone like me. Everyone.
Including people who feel every inch of everything I have said and all the things I want to say and can’t, but who will never speak or write a single word that anyone can understand. Including people who are in protective hiding from their own humanity. ALL OF US.
And I am not different or special here. I’m not speaking only for myself when I say that I am real. I am amplifying the message of lots of people saying the exact same damn thing without words. I am amplifying my own message at times in the past when I have not been capable of words, at times in the future when I will not be capable of words. This is all of us and always.
Some people are pouring every ounce of their being into saying this but nobody hears, not even their loved ones. Or they only partially hear, and can’t hear all of it. So I’m saying it.
Some people are unable to risk doing that, even as their souls are screaming unheard. Sometimes unheard even by themselves. So I’m saying it.
I am telling you this is happening because right now I can. I’ve never been able to before. I don’t know if I will be again. But right now I am doing my best.
I am also telling you that no matter who you are, I know that you are real. I don’t have to know you personally.
Also, to make it very clear: I don’t have to like you. I don’t have to trust you. I don’t have to allow you to harm people. I don’t have to totally avoid harming you if it’s the only way to stop you from doing harm. If punching you in the face will keep you from killing someone I’ll do it, but I’ll do everything in my power never to do that just because I feel angry at you. The world is messy and sometimes we have to make messy choices.. It doesn’t mean I don’t know or care that you exist.
Also: I can’t do this alone. None of us can. We were never meant to. No one person was ever meant to do every right thing. It’s not humanly possible. All of us are prone to particular errors as well as particular ways of getting things exactly right. All any of us can do is figure out who we are supposed to be and be that person in the most active and committed way we can. None of us will get it right all the time. All of us have something valuable to give the world. The best thing we can do is get out of our own way.
This is not like adopting a permanent unchanging moral code. This is something each of us has to choose moment by moment. Because we are living beings in a living world. Pretending the world isn’t shifting and changing around us, and that we don’t have to respond to changes in the world and in ourselves, won’t help.
And even if we’re fumbling in the dark, in freefall, not really totally knowing where we are, the fact that we are trying counts for something. There’s a reason that parts of the world got abruptly worse when “intent isn’t magic” became a meme.
There’s a grain of truth there — unintended consequences are real. But in adopting that as a motto, people forgot something very important:
The sincere and dedicated attempt to truly do the right thing can be extremely powerful even when we don’t always know what’s right or fuck up or cause problems for people. Sometimes the road to hell is paved with good intentions, but total disregard of intentions is a surefire portal to hell on earth.
Knowing you have a soul is hard.
Love is hard. It’s not a feeling. It can cause feelings — lots of them, not always pleasant either — but it’s not itself a feeling. It’s a thing, a surprisingly concrete reality, a constant action, a choice.
And without it I don’t think we can get very far.
And if we X anyone we X everyone. And that goes well beyond ourselves, well beyond even just humanity.
There’s also been a lot of talk about whether humanity can physically survive at this point.
And I think we’re honor-bound to try, even if we can’t.
And if we can’t — even if we’re dead certain we can’t — we have a responsibility to all the life that will take our place in the world when we’re gone.
That’s something that applies on a personal level, to our own personal deaths. And it’s something that applies on a large-scale level, to our survival as groups of people, as cultures, as species, as life.
Even if we find out for sure we won’t be around, that not only doesn’t let us off the hook, it makes it more important we try to do right by whoever and whatever comes after. Even if we feel kind of like this:
Part of the reason I’ve had this come up again and again in recent years is I really didn’t expect to survive this long. Without certain medical diagnoses happening at nearly the last second, I wouldn’t be here. Many times over. I was in the ICU a year ago. I have an aspiration-related infection right now that, even though it is going great compared to some I’ve had, still fucked up my pulmonary function tests this week more than I expected. These things force you to think on this level.
None of us knows how long we have, whether we’re healthy or not. It’s important to remember that and to make the time we have count. These are not fluffy platitudes. They are intense, deep, difficult realities with complicated answers we may never totally find. But it’s important to try.
So I’m here to ask you. Maybe even to beg you.
To (if you have them in the first place) put down all the tools you normally use to pick apart and demolish arguments, to decide whether a person is espousing a particular ideological philosophy and whether that philosophy is an acceptable one or an unacceptable one.
This isn’t about winning and losing, gaining points or one-upmanship morally or intellectually. This isn’t about your ego, or mine, or the ways they can duke it out, or getting the words and concepts exactly perfect, or what team you’re on, or what team I’m on. So put all that crap down just for a second. And if you get hung up on ‘soul’ or some other word, read what I said above about that and put all that crap down for a second too. And if you don’t personally like me — you don’t have to, but please put that down as well. For at least a moment.
And just understand, even for a second:
I have a soul.
People who are like me have a soul.
People who look like me have a soul.
Disabilities don’t ever get rid of that.
We can’t go around Xing people — erasing their souls, or trying to, or pretending their souls don’t exist.
And we don’t have to — can’t — know everything, get everything right, be everything for everyone, avoid all conflict, agree, etc.
But I think we do have to try to keep in mind people have souls and do our best to always act on that. Both towards others, and towards ourselves.
I don’t think I actually know that much — but I think I know that, and that the years of effort it’s taken to say this mean something. And understand as much as you can — it really is years, I’m not exaggerating. And that if you saw me on the street you might think me mindless or soulless. And that it’s not my ability to write this (or anything) at this (or any) particular moment in time, that contradicts that assessment. But my ability to write can make you aware of it, so I’m taking as much advantage of that as I can.
And I’m pretty sure it’s our reality that matters, and everything else is details we have to muddle through as best we can. We need each other.
Signed,
One small but important part of existence, in one small but important place, like you.
