Crocheter. Cat person. Originally from Redwood Terrace, and my heart has never left. Based more in sensory reality than language or ideas. Very Hufflepuff. Chaotic-good.
Don't wanna be here? Send us removal request.
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âWhat happened to Andre McCollins is still legal. It shouldnât be. It wouldnât be legal for anyone else â not convicted terrorists, not captured enemy combatants, not anybody. And it shouldnât be: torture should not be legal. But it happens every day to disabled people.â
Article by Cal Montgomery, please pass along far and wide.
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then ⌠nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
For more information: http://autistichoya.net/judge-rotenberg-center
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).
#StopTheShock#torture#institutions#disability rights#ActuallyAutistic#ableism#ActualllyDD#psychiatric ableism#developmental ableism#cognitive ableism#psychiatric institutions#developmental disability#psychiatric disability#disability
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Redwoods
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 canât 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.]
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Listen
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 youâre 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.
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Confession: When I first heard âweblogâ...
...I seriously thought it meant an online record of a webmasterâs changes to a website.  I had no idea it meant something else, would get shortened to âblogâ, 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 Iâm not that old but online eras are so short) and would take over the Internet. Â
Usually I hide when I donât understand something. Â Itâs instinctive. Â Itâs how I got an expressive vocabulary much larger than receptive. Â But Iâm trying to be honest when I really donât know what a word means.
#actuallyautistic#actuallyDD#over 35#language comprehension#vocabulary#weblog#blog#blogging#bloggers#blogs#weblogs#language#receptive language#guestbooks#Internet#www#web#web history#Internet history
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Ever wondered what those yarn weights meant?
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This one is pretty fucking serious. Itâs not about voter fraud, itâs about shitcanning everyoneâs ability and right to vote.
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My Offline Social Life In a Nutshell
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 donât talk to each other But sideways-glancing, we see
[Image description: Â Large field, of plants, thereâs a weeded spot thatâs mostly just dirt, Iâm kneeling down pulling weeds, you canât really see my face.]
Most of my in-person social interaction works like this. Â Itâs 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. Â
I owe my life to the DD system. Â I have given up so much to survive the DD system even at its best. Â Neither of these things can be ignored. Â Everyone who uses this system to survive, gives up things you may not be able to imagine. Â This should not inspire pity or a sense of sad inevitability -- âthings have to be like this, itâs too badâ -- but outrage and love and common humanity. Â This is an area where people donât really differ from each other in anything but shape. Â Donât kid yourself that weâre some kind of second-tier human beings who innately can take this because weâre not quite as real as you and donât feel it. Â Most of us spend our whole lives shoving our humanity into boxes to survive and itâs never enough to please the forces that push us in that direction. Â We feel it. Â It always comes out in one way or another. Â All of us. Â Even those of us in hiding from ourselves.
Iâm nervous about telling you the price we pay to be here. Â I feel like iâm revealing a dangerous secret. Â 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. Â But if it continues without change, with everyone simply saying weâre lucky it exists -- which we are, but thatâs not the whole story. Â And without people knowing the whole story, we try to cram our souls into boxes. Â 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, Itâs long. Â But thorough..]
#actuallyDD#actuallyautistic#gardening#spilled ink#self-advocacy#poetry#social life#socialization#offline social life#offline socialization#indirect socialization#parallel socialization#indirect interaction#parallel interaction#developmental disability#DD services#DD system#being human#being real#being a person#real person#humanity#personhood#communication#indirect communication#parallel communication#DD self-advocacy#garden#zucchini#corn
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Found this. Â I wrote it while still mildly delirious after a 5-week hospital stay. Â Still think tiâs important. Â 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.
Don't ask, I can't tell. I can't even explain.
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 didnât see but felt her fall. I didnât see but felt life struggle to maintain itself, and fail. I didnât understand. I never understood. I couldnât 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 Iâve tried to hide what is gone. But Iâm 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 canât tell you all of my wishes, because they are all in code. I canât tell you what I canât do anymore. Itâs 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 canât tell you what Iâve lost or what Iâve gained.
I can still see more than people want for me to see. I can still feel things deeper than people expect. What I canât understand, I still canât understand, only more. I still want things that canât be named. I still canât tell you any other way than this here, right now. What stays, what shifts, whatâs changed.
If you wanted something different, I canât help it. This is what you get. If you donât understand, maybe itâs not here for understanding. Iâm just exhausted, and didnât 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.
Donât tell me what I should have said. Chances are, I couldnât. This is brain damage weâre talking about. It isnât convenient. It doesnât instantly vanish. If I could only tell you a tenth of it.
Itâs hard to look around and see that nearly everything I used to pay attention to, is impossible to understand. Itâs hard to know I canât say anything unless it follows a particular pattern, like this does. I couldnât say this part without all the rest before it. All the rest. Not something else. Something acceptable.
Iâm scared and I couldnât tell you why. Itâs winter and the wind is blowing hair in my face. Iâm glad I have the scarf around my heart. Otherwise Iâd get lost in all the snow. Everything used to be familiar. Now thereâs so much snow I canât identify anything. Or not much of anything.
Please, something be familiar. Something be unfrozen. Something be other than white. I feel tiny, and Iâm shaking, and I donât remember anything. Not what I just said, not that youâre alive. In here, I donât know you. I donât know me. I donât know anything.
But it always fades back. And thereâs always more. And I always find myself writing this. To you. To who? To me. To they. I donât know. All I know is I couldnât have written this any other way. And maybe someone can even figure out what I meant. Because itâs 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 donât check you for it. Thatâd take time. So of course theyâre blindsided by my paranoia and then, after that was gone, sliding into the blank white snow everywhere. They only noticed what affected them.
Iâm out. But itâs not over. And I wish I could tell you the things I canât say or understand. But theyâre just lost. And I get scared if theyâre ever coming back. And this was the only way to tell you. So donât ask it to be less roundabout or full of things that didnât literally happen. Because right now thatâs one thing I canât do, canât do at all. Donât call this creative writing itâs the only damn writing I have at all this moment. And what Iâve done hurts like blinding colors in my eyes instead of a scarf warming my heart. If sheâs dead or asleep, I canât tell you, donât know, but it hurts.
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Why do people always say I have brown eyes?
Another appearance-related post My eyes are mostly dark green. Â With a small circle of brown in the center. Â 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. Â Sometimes if they get up close theyâll admit theyâre hazel, sometimes they insist they have to be brown.
Most people are not red-green colorblind. Â Whatâs happening here?
#eye color#brown eyes#green eyes#hazel eyes#brown and green eyes#why do people think I have brown eyes?#eyes#my eyes#Mel#selfies
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Updates to the DSM donât 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.  Iâm autistic.  In the mid-1990s I was undiagnosed with autism and rediagnosed with âpsychotic since infancy schizophrenic since adolescenceâ by people who were very explicit I didnât 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, thereâs 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 donât 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.  Itâs far more complicated than this, this is just the overview.  But I hope itâs an example of how not everyone changes their views at the same rate.  In France, itâs still commonplace to view autism through a psychotherapeutic lens and view it as the motherâs fault.  People who think updates to psychiatric concepts are without controversy and occur instantly havenât been looking too closely.
Ok, so Iâm a little bit sick of the âasexuality is no longer medicalizedâ attitude a lot of people have taken recently, specifically in regards to asexuality and HSDD.
So, yeah, asexuality was officially given an exception in the DSM-V.Â
Thatâs a huge step from before, when you could be diagnosed with HSDD simply for being asexual and having interpersonal difficulties because of it.
But, thereâs still a couple problems.
 1: The patient has to self identify as asexual. Combined with visibility issues, you may get people who feel âbrokenâ and distressed because of their asexuality, people who may be okay with identifying as ace if they knew about it. Thatâs one of the reasons we need to keep fighting for visibility.Â
2. Hereâs 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, thatâs a big fucking problem.
Now, wait up a second. The DSM is put out by the APA, an American organization.
SoâŚ.itâs 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, letâs explore HSDD in the ICD.
F52.0 Lack or loss of sexual desireÂ
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.
Includes:Â
  frigidity
  hypoactive sexual desire disorder.
found here.
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.
found here.
The American Psychiatric Associationâs Diagnostic and Statistical Manual of Mental Disorders (DSM-IV TR)4 and the World Health Organizationâs 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.
found here.
So, Iâm noticing a very distinct lack of the âasexuality exceptionâ (yes Iâm calling it that) in here. Combined with the âinterpersonal difficultiesâ criterion, Iâm not seeing much difference between this and the DSM IV.Â
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 â and more interesting.
from here.
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.Â
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.
from here.
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 thatâs 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 youâve got more to add to this post, Iâd love to see it. However, I am going to ask that we donât discourse on this post. I know. Iâm a discourse blog asking for no discourse. Just please, for once, letâs not.
Anyways. On that cheery note, Iâm done.Â
#asexuality#psychiatry#actuallyautistic#actuallyDD#infantile psychosis#childhood psychosis#infantile schizophrenia#childhood schizophrenia#psychosis#schizophrenia#diagnostic throwbacks
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These are the elephant shrew babies born at the Chester Zoo! Their names are Ping and Pong, because they were as big as ping pong balls when they were born.
https://www.youtube.com/watch?v=0nxCfGx0Bjg
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I live in the USA near a teaching hospital -- and thereâs another teaching hospital fairly nearby --Â and have never been surprised at truly awful wait times. Â Iâm on Medicare/Medicaid.
"But they have long wait times in Canada!"
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 âem, 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 âyou can see a specialist in a week!â Nonsense. No you canât. Not with elite insurance and not as an existing patient. Iâve 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 canât even afford to go to the doctor and people justify it by saying âbut 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 donât like!
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The extreme closeup of my face has an explanation eventually, I promise. Â (And not just the fact that Iâm fascinated and baffled by the fact whenever I see closeups of my face I think of a cat who got too close to the camera.)
I have a lot of memories of childhood, that all have the same general pattern to them. Â I will be somewhere with people. Â They will say things. Â My memory will record exactly what they said. Â By exactly, I mean, the sounds, the tone, everything about it. Â Quite often -- if acoustic conditions are right -- with no particular distortions of auditory processing. Â Meaning I can make out the exact sound of the words, possibly with more precision than average, not less. Â Except...
Thereâs no meaning in the words.  Or thereâs limited meaning in the words.  Or I know the meaning of some but thereâs no meaning in others.  Or the meaning cuts out in some other way, partially or fully.  Or I donât even know words are a thing that can have meaning.  Generally under these circumstances -- and I know this contradicts a stereotype, but thatâs why itâs a stereotype, not a universal truth -- Iâll understand the tone perfectly.  And by perfectly, I mean at a level more detailed and nuanced than most people seem to understand tone.  (The more I understand words, the less I understand tone, especially in the moment.  Itâs all about brain resources, not about a permanently broken tone comprehension system.)
So the memory that prompted this photo, and this post, is one where I was in a park.  A little girl ran up to me and stared at my face and said, âAre you wearing makeup?â  I didnât understand a single word.  I think my mom may have tried to explain something to her, but I donât know what she said.  And even if Iâd been trying to understand, and capable of understanding words, I wouldnât have known what makeup was.
So... my face does things like the above.  Thereâs no makeup there.  I think the very pink eyelids (and some other areas) contrasted with my overall yellowish skin tone kind of amplifies the appearance of makeup, even though I donât know of anyone whoâd do the bottom part of their eyes that way.
My eyelids can also turn various shades of blue, greenish, brown, or a kind of muddy grayish dark color. Â Pretty much spontaneously. Â Sometimes along with the area underneath my eyes, sometimes not. Â Theyâve always done this to some extent. Â Even when I got enough sun that my skin was much darker than this. Â I think maybe my eyelids are just extremely thin, so small changes in blood flow can have a very visible effect.
And thatâs just my eyes. Â My cheeks and lips change colors pretty readily too.
Iâve never actually really worn makeup.  Except for plays and stuff like that.  But in everyday life, no.  I tried a few times just with stuff sitting around the house.  The reactions I got (âyou look like you have a black eyeâ etc.) confirmed that it seemed to be a pointless idea.  And by temperament itâs just never really been my thing.  I only even tried it during a time period when I was about ten and thought I was âsupposed toâ, during which I was doing lots of things I wasnât really into.  My brother wore way more makeup as a teen (he wasnât a goth, but he was in some kind of eighties subculture that somewhat resembled that aesthetic) than I ever did.  (I think I might have never put on a shred of the stuff as an actual teenager.)
But Iâve been told that even when I was a baby I often looked as if I was wearing makeup, eye makeup in particular, and not always the same color.
So if you ever think you see Iâm wearing makeup, in order of possibility, itâs:
This weird thing my skin does.
A costume.
Some kind of attempt to disguise myself.
#1 is by far pretty much always what itâll be. Â Iâve never done #2 since I was a kid. Â And I really honestly canât figure out how #3 would happen, itâs just the only other remote possibility I could come up with. Â That and Iâve known people who use makeup as sunscreen, but I donât know if Iâd be able to manage the logistics of that even if I wanted to.Â
And no this isnât super important but not everything has to be and Iâm exhausted.
#childhood#receptive language#actuallyautistic#skin#not makeup#makeup#selfies#Mel#face#eyes#eye makeup#not eye makeup#language#words
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Igor being Igor on top of me. Â Yesterday or the day before.
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Kitten wisdom! Â Igor has so much of this.Â
@injygo
A Tarot in progress picture:
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Iâve been struggling with how hard it is to hold onto full consciousness that  Iâm a human being equal to other human beings.
And understand that this is confusing.  So when I write about decisions I am making, donât take them as judgements on people who donât or canât make similar decisions. And donât assume that I am even totally certain Iâm right -- Iâm pretty sure  Iâm right about the core idea, but the details are confusing as hell. Â
In a lot of this, I feel like Iâm in some kind of freefall. Â People have dealt with similar things for a long time, and Iâve gone out of my way to seek them out and learn as much as I can. Â But a lot of the learning is necessarily by analogy. Â And there are paths Iâm trying to take -- Iâm certain others have taken them before me, but if any of them were able to write more than the most cursory maps, I havenât been able to find them. Â
Which is why it becomes important to record even my own flailing in the dark. Â Because maybe -- itâs been the case before -- maybe it will help someone whoâs flailing around in here with me, perhaps freefalling in the same place but weâre all unseen to each other, only sensed indirectly.
I have been writing a lot of things, none of which are finished yet. Â I canât really help the length. Â Iâm sorry in advance to anyone who (like me, believe it or not) has trouble reading long things.
Also understand why Iâve put photos throughout this post in various places. Â 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. Â The words are just an attempt to convey things that words can only point to without getting there. Â So youâll also see things like this (and if I could do image descriptions I wouldnât need the images -- all I can say for any of them is that they show my face as Iâm writing different parts of this, which by the way was not written in order):
Being sick is a weird thing. Â It renders me vulnerable to all manner of nonsense. Â But it also pulls down my defenses against reality. Weâve all got defenses against reality. Iâm perhaps more aware of mine than a lot of people, but still can only pull them down at will for short periods of time. (Weâve 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. Â Because I am aware of my full humanity, or as aware of it as I can generally get. Â 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 Iâve proven it to you, but people otherwise just like me who havenât proven it are not people to you, Iâm not actually a person to you either. Â Real peopleâs personhood is not conditional.
Iâve 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. Â This is the first attempt that I think will actually make it.Â
But what prompted this post in particular.
Thereâs a lot of people in my life who vary a lot in how much Iâm considered a person to them.
Thereâs one person who, while they connect with me in certain areas of life we have in common, Iâm 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. Â How I am always trying to understand other people. Â Not just intellectually but to have genuine compassion wherever thy are at and whatever they are doing.
And. Â Okay. Â Iâm disabled. Â Theyâre 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. Â To make things even more adversarial, more us-vs.-them, than they started out. Â 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 thatâs not a viable way for anything to actually work.
And also...
Okay one of my posts is about a concept Iâm semi-borrowing from Madeleine LâEngleâs A Wind In The Door: Â Xing. Â 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 donât accept all the parameters in that book. Â I donât think real Xing is possible. Â But I think people try to X people all the time. Â I think disabled people are highly subject to Xing and this is highly socially acceptable. Â 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. Â And the fact that itâs socially acceptable in many contexts doesnât make things better.
Xing is about trying to erase your soul, or pretending your soul never existed. Â It doesnât 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. Â So please donât bullshit me about my language being wrong or your own discomfort at what you see as a religious concept. Â These things are hard enough to write about without having to second-guess every other word I write.
Anyway, it doesnât matter what your mind or your heart tell you. Â Your soul knows when youâre being Xed. Â And it screams. Â It fights to be taken as real. Â No matter what choices you make. Â No matter what cognitive abilities you have. Â No matter how emotionally anesthetized you think you are. Â Your soul responds.
And the thing about Xing is, it doesnât just work one way. Â 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. Â I donât know how it works, I only know that it works like that every time. Â 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 theyâve done, is not wrong.  And understand -- by compassion, I mean love, I mean empathy.  I donât mean excusing people.  I donât mean forgiving people, although that can happen.  I donât mean putting me or anyone else in danger.  I donât mean sparing their feelings or avoiding the harsh reality of what they are doing.  I donât mean acting like compassion for them is more important than compassion for the people they are Xing.  I donât 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 donât mean ignoring who ultimately has power over who else.  Donât 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, thatâs 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. Â This is a fundamental property of reality. Â 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. Â Even if it is a crime that will never be a crime, that canât be legislated, judged, heard evidence for. Â Itâs still real. Â
And nothing can get away from that.  There are certain things that are just part of how the world works, and even if we canât make sense of them, we canât make them go away when it seems convenient.  I say seems convenient, because Iâm convinced that even when Xing people seems right, feels right, itâs never right, and will never solve anything for real. Â
I donât know how to go forward.
I donât know how to fight injustice without making it worse.
I donât 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.
Sheâs in a nursing home.
My friend doesnât trust the cops at all -- but still almost called them to make sure this woman isnât 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 âHELP! HELP! HELP! HELP! HELP!â
A worker at the nursing home felt sorry for her.  Told me, âThat poor woman, she has dementia.â
The worker was participating in that womanâs 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 âshe has dementiaâ.
And I remembered the woman from my childhood visits to nursing homes.
And  I remembered that she didnât 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. Â Institutions always X people. Â
So she was being Xed in so many ways.
And her soul felt it and responded. Â You could hear it in her voice. Â There is a sound to a soul that is refusing to be erased.
I donât know -- and honestly donât care on one level -- how much she understood intellectually. Â Whether she knew where she was. Â Whether she knew who she was.
I donât have dementia. Â I do have wildly inconsistent cognitive abilities. Â 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. Iâve had time drag to a crawl in such a state. Â 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. Â This was not actual human interaction. Â They were not acknowledging I existed.
And I felt it. My soul felt it. And my soul responded. Â
So I know that you donât need to have enough working brain cells to rub together to create conscious thoughts, to feel when youâre being Xed, and to respond on a primal level. Â
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 Iâm too stupid to know other people are even more stupid than me.
I think itâs pretty fucking evil to act like Xing people with cognitive disabilities doesnât damage us or cause us pain.
I think this evil has become commonplace and acceptable. Â This does not make it less evil. Â Sometimes itâs impossible to evade a structure that forces you to at least partially participate in evil. Â But itâs 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. Â 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 itâs 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 canât ignore the pain of your soul.  You canât 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... theyâre confusing. Â Thereâs not as many roadmaps. Â Thereâs not as many people. Â They look different for each person. Â Nobody can do everything. Â Everyone has a part to play. Â Sometimes people do good things while doing the wrong thing. Â There arenât 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.
Itâs hard. Â And confusing.
And right now. Â Iâm looking at you. Â Whoever you are. Â One human being with a soul to another human being with a soul.
I see you. Â You are real. Â So am I. Â Weâre in this together.
Sometimes you need a reminder that each of us is a human being behind the computer screen.
I donât know where Iâm going. Â Where weâre going. Â But I know I have to try. Â I canât accept any system that Xes anyone. Â Whether that system is an institution, or an attempted fight or philosophy for liberation. Â I canât. Â I wonât. Â I will always try.
I wonât accept that anyone is soulless or empty.
I wonât accept that my soul always has to be filtered through an ego that distorts its intentions.
I wonât accept being Xed.
Which also means I wonât accept having to X anyone.
I canât always resist doing the wrong thing. Â There will be systems outside me that push me in the wrong direction. Â There will be my own ego and illusions steering me wrong. Â There will be unintended consequences, both for good and for bad. Â But I canât give up and act like that doesnât matter.
If you are out there trying to figure this out, trying to grope around in the dark, I am here with you. Â Lots of people are here with you. Â None of us are alone.
And... sometimes I wonder if Iâm crazy.  Well I know Iâm 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.
Iâll probably talk about my perceptions of other people in another post. Â Thatâs an entire topic in itself.
Also -- people often think thereâs something special about my cats. Â Because of the way they interact with people. Â Because of the way you can feel that they have souls.
Thereâs nothing special about my cats. Â I do my best not to X them. Â They donât learn to X themselves. Â Thatâs the only thing different. Â You canât always do right by cats but you can try as hard as possible.Â
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.
Itâs being a person because I can type in coherent English some of the time and people know it.
Itâs being a person because Iâve displayed a real or illusory ability.  And people just like me who havenât -- or who are assumed they havenât, even sometimes have people deliberately cover up that they have -- arenât people.  This is still Xing.  And it gets really insidious when people go, âYouâre not like them, and they arenât like you,â as if they decide.  As if, in the wrong situation, I am not somehow exactly âthemâ.  Real peopleâs personhood is never conditional. Â
Or.
Itâs people trying to make me a person.  Iâm a person already.  You didnât create my soul.  You donât make yourself better by going through the motions of making me look kind of real.
Or.
Itâs people saying Iâm a person. Â But not meaning it. Â Not understanding it. Â
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 canât be that.  I canât accept that.  My soul screams when I see it happening to other people.
You canât make someone a person by celebrating that they are a mindless heart, or a heartless mind, or a bodiless mind, or a bodiless soul. Â
All of us have whatever is meant by mind, heart, body, and soul. Â We donât all look the same, we are not all the same, but none of us are missing essential parts of our nature. Â Â
You donât have to compensate for the the âmissingâ part by emphasizing some other part.  You donât 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.  âYou donât have a mind but thatâs okay.â âYou donât have a body but thatâs okay.â  âYou donât have a heart but thatâs okay.â
No.  itâs not okay.  Our minds and bodies and hearts and souls may look different, may be different, but theyâre not absent.
Itâs 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. Â I have to be a human being. Â I have to be a human being.
Being a human being hurts sometimes.
It cuts so deeply to watch yourself being Xed. Â To be isolated. Â To be expected to be grateful for being allowed to exist. Â 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 wonât 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. Â To struggle to maintain awareness of who you are without going crazy in a world that tells you you donât exist.
I say it again -- Iâm here with you.
I am a person. Â You are a person. Â 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. Â
Including people who feel every inch of everything I have said and all the things I want to say and canât, but who will never speak or write a single word that anyone can understand. Â Including people who are in protective hiding from their own humanity. Â ALL OF US. Â
And I am not different or special here. Â Iâm not speaking only for myself when I say that I am real. Â I am amplifying the message of lots of people saying the exact same damn thing without words. Â 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. Â This is all of us and always. Â
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 canât hear all of it.  So Iâm saying it.
Some people are unable to risk doing that, even as their souls are screaming unheard. Â Sometimes unheard even by themselves. Â So Iâm saying it.
I am telling you this is happening because right now I can. Â Iâve never been able to before. Â I donât know if I will be again. Â 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. Â I donât have to know you personally. Â
Also, to make it very clear:  I donât have to like you.  I donât have to trust you.  I donât have to allow you to harm people. I donât have to totally avoid harming you if itâs the only way to stop you from doing harm.  If punching you in the face will keep you from killing someone Iâll do it, but Iâll 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 doesnât mean I donât know or care that you exist. Â
Also: Â I canât do this alone. Â None of us can. We were never meant to. Â No one person was ever meant to do every right thing. Â Itâs not humanly possible. Â All of us are prone to particular errors as well as particular ways of getting things exactly right. Â 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. Â None of us will get it right all the time. Â All of us have something valuable to give the world. Â The best thing we can do is get out of our own way.
This is not like adopting a permanent unchanging moral code. Â This is something each of us has to choose moment by moment. Â Because we are living beings in a living world. Â Pretending the world isnât shifting and changing around us, and that we donât have to respond to changes in the world and in ourselves, wonât help.
And even if weâre fumbling in the dark, in freefall, not really totally knowing where we are, the fact that we are trying counts for something.  Thereâs a reason that parts of the world got abruptly worse when âintent isnât magicâ became a meme. Â
Thereâs a grain of truth there -- unintended consequences are real. Â But in adopting that as a motto, people forgot something very important: Â
The sincere and dedicated attempt to truly do the right thing can be extremely powerful even when we donât always know whatâs 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. Â Itâs not a feeling. Â It can cause feelings -- lots of them, not always pleasant either -- but itâs not itself a feeling. Â Itâs a thing, a surprisingly concrete reality, a constant action, a choice.
And without it I donât think we can get very far.
And if we X anyone we X everyone. Â And that goes well beyond ourselves, well beyond even just humanity.
Thereâs also been a lot of talk about whether humanity can physically survive at this point.
And I think weâre honor-bound to try, even if we canât. Â
And if we canât -- even if weâre dead certain we canât -- we have a responsibility to all the life that will take our place in the world when weâre gone. Â
Thatâs something that applies on a personal level, to our own personal deaths. Â And itâs something that applies on a large-scale level, to our survival as groups of people, as cultures, as species, as life. Â
Even if we find out for sure we wonât be around, that not only doesnât 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 Iâve had this come up again and again in recent years is I really didnât expect to survive this long.  Without certain medical diagnoses happening at nearly the last second, I wouldnât 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 Iâve had, still fucked up my pulmonary function tests this week more than I expected.  These things force you to think on this level. Â
None of us knows how long we have, whether weâre healthy or not. Â Itâs important to remember that and to make the time we have count. Â These are not fluffy platitudes. Â They are intense, deep, difficult realities with complicated answers we may never totally find. Â But itâs important to try.
So Iâm here to ask you. Â 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. Â
This isnât about winning and losing, gaining points or one-upmanship morally or intellectually.  This isnât about your ego, or mine, or the ways they can duke it out, or getting the words and concepts exactly perfect, or what team youâre on, or what team Iâm on.  So put all that crap down just for a second.  And if you get hung up on âsoulâ or some other word, read what I said above about that and put all that crap down for a second too.  And if you donât personally like me -- you donât 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 donât ever get rid of that.
We canât go around Xing people -- erasing their souls, or trying to, or pretending their souls donât exist.
And we donât have to -- canât -- 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. Â Both towards others, and towards ourselves.
I donât think I actually know that much -- but I think I know that, and that the years of effort itâs taken to say this mean something.  And understand as much as you can -- it really is years, Iâm not exaggerating.  And that if you saw me on the street you might think me mindless or soulless.  And that itâs 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 Iâm taking as much advantage of that as I can.
And Iâm pretty sure itâs our reality that matters, and everything else is details we have to muddle through as best we can. Â We need each other.
Signed,
One small but important part of existence, in one small but important place, like you.
#love#reality#interdependence#ethics#ableism#cognitive ableism#souls#Mel#selfies#vulnerability#being real is hard#being real can hurt#being real#everyone is real#I am real#you are real#important things#important#long post#marona#it really did take years to be able to write this#institutions#death#species death#disability#cognitive disability#delirium#dementia#illness#chronic illness
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