A tiny seed of redwood sorrel, slumbering in its soil nest
Stones in its lowest spots say to grow upward
Silent hope for something sorrel can’t explain
Stirrings that see it slip from the soil, seeking sun
Sun on the leaves sweet sugar within
Sorrel is social, surrounded by sorrel-friends
Redwood sorrel seeks solely to live in the light
Supported by soil, the sun in the sky shining down
[Writing prompt - redwoods - provided by binghsien.]
And you can hear the redwood sorrel talking to each other. They are tiny plants. They look almost like clovers, but they are red on the bottom. They taste citrusy. But what is important is they live in big clumps, they can carpet the entire floor of a forest if given half the chance. And if you are really really quiet, and really really listen… listen with your whole body, not just your ears… then you can hear the way they talk to each other. They whisper. The wind whispers through them, even a slight breeze. Nobody pays them much notice, because they are on the ground, and everyone comes to see the redwoods. But next time you’re in the redwoods, listen to the redwood sorrel. It knows the secrets of the forest floor, of the soil it is so close to. Those are secrets worth learning.
…I seriously thought it meant an online record of a webmaster’s changes to a website. I had no idea it meant something else, would get shortened to ‘blog’, resembled a cross between a diary and a guestbook (anyone remember when guestbooks were the main way to communicate with website owners? anyone remember the Internet before websites? I swear I’m not that old but online eras are so short) and would take over the Internet.
Usually I hide when I don’t understand something. It’s instinctive. It’s how I got an expressive vocabulary much larger than receptive. But I’m trying to be honest when I really don’t know what a word means.
I kneel in my garden
You bend over in yours
I am weeding zucchini
You are watering corn
Staff talk to each other
They talk to you and to me
You and I don’t talk to each other
But sideways-glancing, we see
[Image description: Large field, of plants, there’s a weeded spot that’s mostly just dirt, I’m kneeling down pulling weeds, you can’t really see my face.]
Most of my in-person social interaction works like this. It’s as much an artifact of the developmental disability system I am forced to live in to survive, as it is an artifact of anything particular about me or the woman I wrote this about, who I have only met in this kind of context.
I owe my life to the DD system. I have given up so much to survive the DD system even at its best. Neither of these things can be ignored. Everyone who uses this system to survive, gives up things you may not be able to imagine. This should not inspire pity or a sense of sad inevitability – “things have to be like this, it’s too bad” – but outrage and love and common humanity. This is an area where people don’t really differ from each other in anything but shape. Don’t kid yourself that we’re some kind of second-tier human beings who innately can take this because we’re not quite as real as you and don’t feel it. Most of us spend our whole lives shoving our humanity into boxes to survive and it’s never enough to please the forces that push us in that direction. We feel it. It always comes out in one way or another. All of us. Even those of us in hiding from ourselves.
I’m nervous about telling you the price we pay to be here. I feel like i’m revealing a dangerous secret. I feel like, in a system that is taking the place of something much worse, a system I need for survival, a system under threat right now, is not something I should be openly criticizing. But if it continues without change, with everyone simply saying we’re lucky it exists – which we are, but that’s not the whole story. And without people knowing the whole story, we try to cram our souls into boxes. Our souls eventually object.
Meanwhile we often try to connect with each other indirectly rather, as described in the poem.
[If you want more on why and how our souls object, see this post, It’s long. But thorough..]
She skated towards me wearing a red winter scarf. My feet were frozen to the ground. She waved her scarf in the air from a distance. It was the only thing with color in sight. Then it flew through the air and landed in my hands.
I clutched the scarf tight. I didn’t see but felt her fall. I didn’t see but felt life struggle to maintain itself, and fail. I didn’t understand. I never understood. I couldn’t make sense of anything anymore.
I never let go of the scarf. I unzipped myself and wrapped it around my heart. To keep peverything warm when nothing was certain. And then I cried until I thought I would never stop.
And I’ve tried to hide what is gone. But I’m not sure if it fools anyone. There are places we used to go, things I used to do, and they seem as dead as she is. Only sometimes I feel something squeeze my heart. And things pop into focus once again, in color.
I can’t tell you all of my wishes, because they are all in code. I can’t tell you what I can’t do anymore. It’s just one more room in the building, left blank and unexplored. I wish I was known for who I was and not for what I did. I can’t tell you what I’ve lost or what I’ve gained.
I can still see more than people want for me to see. I can still feel things deeper than people expect. What I can’t understand, I still can’t understand, only more. I still want things that can’t be named. I still can’t tell you any other way than this here, right now. What stays, what shifts, what’s changed.
If you wanted something different, I can’t help it. This is what you get. If you don’t understand, maybe it’s not here for understanding. I’m just exhausted, and didn’t have the energy to tell you the normal way. So I took what I had and I went where I could. And this is what you get.
Don’t tell me what I should have said. Chances are, I couldn’t. This is brain damage we’re talking about. It isn’t convenient. It doesn’t instantly vanish. If I could only tell you a tenth of it.
It’s hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. It’s hard to know I can’t say anything unless it follows a particular pattern, like this does. I couldn’t say this part without all the rest before it. All the rest. Not something else. Something acceptable.
I’m scared and I couldn’t tell you why. It’s winter and the wind is blowing hair in my face. I’m glad I have the scarf around my heart. Otherwise I’d get lost in all the snow. Everything used to be familiar. Now there’s so much snow I can’t identify anything. Or not much of anything.
Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and I’m shaking, and I don’t remember anything. Not what I just said, not that you’re alive. In here, I don’t know you. I don’t know me. I don’t know anything.
But it always fades back. And there’s always more. And I always find myself writing this. To you. To who? To me. To they. I don’t know. All I know is I couldn’t have written this any other way. And maybe someone can even figure out what I meant. Because it’s in there. If you look in the right places, and with the right eye for the reality of one experience or another.
I am through, so I hope, sitting up all night with neon pink insects eating my eyelashes. Lying in a sunlit room with parts of me flying into the sky and back again. Night after night trying to avoid being flattened into a grid pattern and dissolved. In lots of pain. With lots of nausea. And I hope never to visit that realm again. A lioness carried me out.
Not that anyone noticed. They come in and change your IV bag and the hours between are left for you to lie still and drift into bizarre hallucinatory worlds that always have an undercurrent of hell on earth to them. They don’t check you for it. That’d take time. So of course they’re blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.
I’m out. But it’s not over. And I wish I could tell you the things I can’t say or understand. But they’re just lost. And I get scared if they’re ever coming back. And this was the only way to tell you. So don’t ask it to be less roundabout or full of things that didn’t literally happen. Because right now that’s one thing I can’t do, can’t do at all. Don’t call this creative writing it’s the only damn writing I have at all this moment. And what I’ve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If she’s dead or asleep, I can’t tell you, don’t know, but it hurts.
Found this. I wrote it while still mildly delirious after a 5-week hospital stay. Still think ti’s important. The rhythm of the words turns out to be a rhythm that was going through my head or on the TV or something at a certain point in my delirium.
Another appearance-related post My eyes are mostly dark green. With a small circle of brown in the center. Like this (yes I was opening my eyes wide so you can see them better):
Or this for a more fuzzy example:
With rare exceptions, people assume I have brown eyes, and sometimes argue with me at length about it. Sometimes if they get up close they’ll admit they’re hazel, sometimes they insist they have to be brown.
Most people are not red-green colorblind. What’s happening here?
Ok, so I’m a little bit sick of the “asexuality is no longer medicalized” attitude a lot of people have taken recently, specifically in regards to asexuality and HSDD.
That’s a huge step from before, when you could be diagnosed with HSDD simply for being asexual and having interpersonal difficulties because of it.
But, there’s still a couple problems.
1: The patient has to self identify as asexual. Combined with visibility issues, you may get people who feel “broken” and distressed because of their asexuality, people who may be okay with identifying as ace if they knew about it. That’s one of the reasons we need to keep fighting for visibility.
2. Here’s the kicker though. The asexuality exception is not included in the diagnostic criteria, but a different part of the text. The desk reference version, which is the smaller version most psychiatrists will use because the actual DSM is a monster of a book, only contains the diagnostic criteria. So, unless a doctor is very familiar with the update DSM, you could still be diagnosed despite identifying as asexual. Obviously, that’s a big fucking problem.
Now, wait up a second. The DSM is put out by the APA, an American organization.
So….it’s probably not used internationally. The international appx. equivalent to the DSM is the ICD (International Classification of Diseases). The current version is ICD-10, although ICD-11 appears to be poised to come out in 2018.
So, let’s explore HSDD in the ICD.
F52.0 Lack or loss of sexual desire
Loss of sexual desire is the principal problem and is not secondary to other sexual difficulties, such as erectile failure or dyspareunia. Lack of sexual desire does not preclude sexual enjoyment or arousal, but makes the initiation of sexual activity less likely.
hypoactive sexual desire disorder.
A disorder characterized by a recurrent or persistent lack of desire for sexual activity. The lack of sexual desire is not attributable to another psychiatric disorder or to the physiological effects of substance use or a general medical condition.
The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV TR)4 and the World Health Organization’s International Classifications of Disease-10 (ICD-10)5 established that the definition of hypoactive sexual desire disorder (HSDD) should include not only the lack or absence of sexual fantasies or desire for any form of sexual activity, but also the presence of personal distress and/or interpersonal difficulties.
So, I’m noticing a very distinct lack of the “asexuality exception” (yes I’m calling it that) in here. Combined with the “interpersonal difficulties” criterion, I’m not seeing much difference between this and the DSM IV.
Ok, so if an asexual were to get diagnosed, how do they treat it?
Some women also benefit from counseling or sex therapy. Specialists can help them cope with any past sexual trauma. They can help women improve their self-esteem and understand their relationships with their partners. Women can learn how to talk about sex with confidence and express their needs and concerns to their partners. They might also introduce ways to make intimacy a bigger priority – and more interesting.
The use of testosterone appears to have a direct role in sexual desire and has been shown to increase desire, but its long-term use is limited by potential side effects, including cardiovascular and liver dysfunction.
Antidepressants may help depression-related low desire, although many of these medications decrease sexual desire, at least initially.
Nonetheless, estrogens replacement therapy has been shown to correlate positively with sexual activity, enjoyment and fantasies.
When no causative medical disorder is found, individual or couples therapy is often recommended.
Yeah. So, my point here is not to freak anyone out (although I know I am a little bit). My point here is that while we should celebrate our victories, this is something that’s flown a little bit under the radar that we probably need to keep talking about, finding solutions for, and then campaigning about these issues.
If you’ve got more to add to this post, I’d love to see it. However, I am going to ask that we don’t discourse on this post. I know. I’m a discourse blog asking for no discourse. Just please, for once, let’s not.
Anyways. On that cheery note, I’m done.
Another thing to note, some non-american countries also use the DSM (Hi from Canada) but will often not update as fast as it is changed. Without outing anyone I do know of people who have been diagnosed with disorders removed from the DSM several years after the new DSM had been published, this difference often depends on the medical colleges in the country and other factors including money, and how standardized psychiatric care is in a region.
A step in the right direction? Sure
Making it safe for any individual Asexual person to say they are Asexual in front of a mental health professional? Nope not at all.
Updates to the DSM don’t always make it through the USA very fast even. Often an updated concept in the DSM or in psychiatry in general can take upwards of 20 years to really catch on large-scale. And there are always holdouts from earlier times. I’m autistic. In the mid-1990s I was undiagnosed with autism and rediagnosed with “psychotic since infancy schizophrenic since adolescence” by people who were very explicit I didn’t fit modern conceptions of schizophrenia. They blamed my mother. All of these views were quite typical of the 1970s and I found basically a description of everything they said about me and my mom in a book I think from 1971, by Frances Tustin about autism and childhood psychosis. Autism was considered one particular form of childhood psychosis at the time, but was thought by many to never involve losses of skills and to require a minimum (yes minimum, not maximum – these were very different times) IQ, among many other things. Anything else was described as infantile/childhood psychosis/schizophrenia. They used the DSM-IV officially to diagnose me (in a way that nobody should ever use to diagnose anyone – they listed each criterion and made me describe myself in a way that fit it) but clearly were working from the 1971 definitions of things. Psychosis is impossible to diagnose in an infant, and references to infantile psychosis are nearly always a coded reference to developmental disabilities like autism. This is because, while most people think of psychosis as a loss of contact with reality such as delusions and hallucinations, there’s also a bunch of other traits that have long been associated with it that have huge overlap with autism which is why for awhile (I don’t know if still) you were not allowed to diagnose schizophrenia in an autistic person except under specific circumstances. Because otherwise nearly all autistic people would meet the criteria. It’s far more complicated than this, this is just the overview. But I hope it’s an example of how not everyone changes their views at the same rate. In France, it’s still commonplace to view autism through a psychotherapeutic lens and view it as the mother’s fault. People who think updates to psychiatric concepts are without controversy and occur instantly haven’t been looking too closely.
I am from the USA.
I have one of the most top-teir private insurance plans available.
I live in a city with four, count ‘em, FOUR hospitals.
I have been a patient of my pulmonologist for 2 years.
I scheduled my next appointment today. The first available appointment?
In three and a half months.
Please stop with this “you can see a specialist in a week!” Nonsense. No you can’t. Not with elite insurance and not as an existing patient. I’ve had to make specialist appointments as far as 8 months out.
Yesterday I made an appointment with my primary for a somewhat urgent matter. His next available? In 3 weeks.
I hate going to the emergency room because the average wait time is 4-10 hours. I ended up in a coma once because of complications caused by the wait time.
I am in the most medically privileged position a chronically ill person in the US can be, and the wait times to see my doctor are still very very long.
There are people in my country who can’t even afford to go to the doctor and people justify it by saying “but in Canada, they have to ~*wait*~.
We wait here too. We wait JUST AS LONG, and sometimes even LONGER.
But not everyone gets to wait, and they die because of it.
That disgusts me.
Universal health care now, please. And yes, my full time working, disabled, chronically ill self is more than happy to fork over taxes so that nobody goes without healthcare-even the people I don’t like!
I waited 22 months to see the top geneticist on EDS here in the US. I waited at least 6 months to see one of the few neurosurgeons who is qualified to do surgery for my condition. Once I had to wait seven months not even to see a doctor, but just to get a sleep study, because the facility is that backed up (though that’s more of a supply failing to catch up with demand problem than just general Ways Things Are. They could build more rooms or facilities and make a profit with the demand… why Tucson doesn’t do this is beyond me and the bane of my existence.) Making a new patient appointment with an actual DOCTOR at a PCP office here ranges anywhere from 4-8 months. You can usually see a NP or an MA sooner, but sometimes it’s still 1-2 weeks for urgent, acute issues for existing patients and 1-3 months for new patients.
But even as sick as my chronically ill disabled self is I wouldn’t care if all those times DOUBLED, if that meant everyone had access to healthcare and people didn’t have to ACTUALLY FUCKING DIE because they can’t get simple things treated.
I get most of my care from the big hospitals in Boston and the first time visits for specialists have AVERAGED 3-6 months. AVERAGE, as in if I get in faster I am usually shocked.
Also, this is assuming you can even get to see the doctor. Insurance sometimes mandates you see a doctor at another hospital they own before one that is in network but not owned by them. So then you have to wait to see that doctor, and usually have that doctor be like ???? I can’t help you, then have to wait for the appointment with the other one.
I live in the USA near a teaching hospital – and there’s another teaching hospital fairly nearby – and have never been surprised at truly awful wait times. I’m on Medicare/Medicaid.
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.
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.
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.
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.
One small but important part of existence, in one small but important place, like you.
…when I found a bunch of large plants – different from the weeds – already growing in my garden plot, I assumed they were the delicata squash my case manager said she’d tried to plant there. I’d never seen a delicata squash plant, so I had no idea. I was puzzled by the fact she’d said the squash plants she planted there all died though, because these plants were alive and well and growing furiously fast, outpacing everything else in the garden.
I asked her “Why did you say the squash died when they’re popping up all over my garden and even in some of the neighboring gardens?”
And she said “Oh, those aren’t squash, those are probably surprise sunflowers.”
I’d forgotten that gardens can sprout random visitors.
I remember as a kid when our compost pile would randomly sprout potatoes because we’d thrown the cuttings in there with the rest of our vegetable waste. Great potatoes, too.
(I wish my potatoes had taken. I think I managed to kill them before I even planted them. The instructions had said to soak them but… we soaked them way too long and in the wrong environment, so… dead seed potatoes. Oh well, they’ll probably at least provide some good waste matter for the rest of the garden.)
Anyway, judging from what’s going on, I’m going to have a lot of sunflower seeds. Those plants are growing fast and popping up everywhere. I’m not quite sure what I’ll do with them – maybe toast them and give them out to other people to eat? – because I doubt I can really get much use out of them even if I put them in a blender. I suspect just judging from their consistency, they’d get chopped up into fine pieces that would then be completely filtered out by the chinois, adding a whopping total of nothing to the finished soup. And eating even a couple could screw up my G-tube for days – seeds and nuts are exactly the kind of thing that loves to get completely stuck in my G-tube and clog the filter.
But I’m quite happy to make food for other people too, and a lot of times people who work here skip meals and get hungry. I hate the sound of people eating, but I like to make food for people, so that’s the tradeoff. (I often ask people to sample my soups, because I know my food opinions could be idiosyncratic. They usually love them. That’s partly me and partly the guy who usually cooks the vegetables these days. He’s a cook in a local restaurant, loves to cook in general, and has a cooking philosophy I love: Alter the vegetables as little as possible, only adding seasonings that bring out the existing flavors. Which basically results in amazing-tasting vegetables so that I can then basically choose how to mix the different vegetables in what proportions in the blender. And then throw in hot peppers or hot sauce if I want it spicy, but other than that usually pretty minimal seasonings required after he’s already through with them. For instance, the most recent soup is sunchokes, tomatillos, butternut squash, potatoes, and a small amount of hot sauce (a mild ghost pepper sauce – yes that’s a thing, they dilute it, someone bought it for me by accident, but it’s really good it sort of warms up your mouth equally all over – and a bit of Sriracha). It’s great. Sunchokes and tomatillos are an amazing combination in general btw. My last soup before that was sunchokes, tomatillos, and asparagus, which came out so perfect it didn’t need anything added in the blender besides water.)
It will be really cool when vegetables actually start growing in the garden, so that I can use them in the soups.