Tube Love

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Drawing of a GJ feeding tube.

Drawing of a gastrojejunostomy feeding tube, GJ tube for short.

Tube Love

Its name in medical-ese is a gastrojejunostomy tube
Or a GJ tube for short
I just call it The Tube

Through nothing more than some tubes
And a syringe
And a feeding pump
I give myself water
I give myself food
I give myself meds
I give myself life
Bypassing my paralyzed stomach

I drain out the life-destroying bile
That would otherwise suffocate me
In pneumonia after pneumonia
Until I eventually got unlucky and died

There are no words for the feeling
Of giving myself a big syringe of cold water
On a hot day
And feeling every inch of it go
Cold
Into my intestines
No stomach to hold it back
No stomach to vomit it up

Maybe the word is love?
My tube is not an inhuman machine
It is a part of me

If love means that you take care of someone
If love means that you save someone’s life
Without thought for your own
If love means that day by day, you do the hard work
Without complaining or tiring
Even when you get clogged up and miserable
Then surely my tube loves me

And I love my tube
It has a personality
It’s grumpy on some days
And happy on others
I try to make it happy

I know more about making a feeding tube happy
Than any of those doctors and nurses
From Gastroenterology
From Interventional Radiology
From Pulmonology

They said I had the mind of a child
That I would pull my tube out trying to play with it
The way young babies do with their feeding tubes
They said I didn’t have the cognitive capacity
To take care of a feeding tube
They said I would fail
They said I would be better off dying
Than even trying the feeding tube
And above all, they said I wouldn’t know
How to take care of it
That it would be a huge burden
That maybe, I belonged in a nursing home
Where they knew how to take care of things like that
And people like me

I just got out of the hospital
The nurses were amazing people
But they nearly ruined my feeding tube
They didn’t know how to make it happy
I’ve been to Interventional Radiology enough
To know that they don’t know the slightest thing
About making a feeding tube happy
Not even the doctors who predicted my doom
Know how to make a feeding tube happy

But I know how to make a feeding tube happy
I have been learning for a year now
Every day, I learn more
Every day, I learn that
If you treat something as if it is alive
And you treat it with respect
Then it will be happier
And it will work better
And it will like you in return
Maybe even love you
And it will give you
Everything it has to give

I love my feeding tube
And my feeding tube loves me
My feeding tube takes care of me
It keeps me alive
It works hard all day long
To keep food and meds and water moving smoothly
And I work hard all day long
To make sure it has the resources to do it with

My feeding tube and me are friends
My feeding tube and me are a team
My feeding tube and me like each other
My feeding tube and me love each other

We have a relationship
My feeding tube and me
We are connected intimately
It is not just a piece of plastic
It is a life-saver
It brought me back from certain death
How can I fail to love it?
And how can I fail to interpret its efforts on my behalf
As its own kind of plastic cyborg love?

I love my feeding tube
I will always love my feeding tube
I don’t care how it sounds
I don’t care if anyone understands
You can’t go through some things with someone
Without finding love there
And with its fate intertwined with mine
Its plastic intertwined with my stomach and intestines
Love is what we’ve found,
Me and my feeding tube
And I will always find ways
To make it happy

Art and poem by Mel Baggs, art 2013, poem 2014.  This is my contribution to Gastroparesis Awareness Month.  To learn more about Gastroparesis and related forms of Digestive Tract Paralysis, go to the G-PACT Website.

I also wrote a longer and more serious post about my life with gastroparesis, which you can read here at Gastroparesis Awareness Month: A Day In The Life.

Can you see the gaps?

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In the voids inside my mind
There’s an ocean, deep and dark
At the bottom of the ocean
There’s reflections of the stars

If you can see the stars
At the bottom, in the deep
If you can see the rainbows
That even the sun can’t reach

If you can see me dancing
Unaware of being watched
If you can see the world
Before a mind, before a thought

If you see distant reflections
Of reflections, of reflections
And if you can see the deep, the dark
The silence between worlds

If you can see the void
That stands in front of me
If you can see how full it is
And how empty it can be

If you see what it’s like
To not know at thirty
What they knew at three

But to know things
And to see things
That nobody else can see

Then maybe, just maybe
I can see you
And you can see me

What came before.

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If I could reach through the computer screen…

I want to hand you a lapis lazuli ball

So you can lose yourself in the deep blue

And be dazzled by the gold specks.

I want you to roll it over and over in your hand

Gently nose it to feel its texture

And weigh it in your hand.

I want to hand you my black tourmaline egg

So you can feel that unique texture

I want you to hold it while you sleep

And wake up to it, warm and slick in your hand

I want to hand you my amber ring

So you can watch the sunlight turn it into fire

And watch the sun set inside it glittering red, orange, and yellow

I want to do these things

So that I can say

We share these sensory experiences

And nothing can take that away

I want to hand things back and forth

And clack them together to hear their sounds

And rub them on our cheeks

And brush them against our fingertips

Then I want to hand you things too big to pick up:

The warmth and smell of a granite mountainside as the sun heats it up all day long.

The liquid sunlight melting across the coat of a cat who embodies sunlight well.

The whole cycle of life that takes place in the soil of a redwood forest. And the smell of that soil.

The deep rumbling sound of the Mother Tree when you’re curled up against it, surrounded by its invisible amethyst glow.

The feeling of lying in bed, but at the same time, being surrounded by a deep, glowing blue sky, as if pre-dawn or post-dusk. And listening to the music of the forest. Listening with my skin, listening with my eyes, listening with my fingertips, listening with my nose. Listening with everything more than my ears. Being wrapped in the song of the forest and the stars and the trees and the soil and the fungus, all singing, all singing inside me.

I know you can feel the layers of sensory experience. The layers of meaning that come before the meaning of mind. The things we were meant to forget, when we learned to think their way. The things we didn’t forget, the things that we retained no matter what we were told to forget. The stillness, the silence. The music in the silence, the growth and death and birth cycling endlessly.

I would hand you these things, if I could reach through a computer screen. And I would take whatever you handed back, and listen to it sing its unique song. And we could communicate the way we are meant to communicate. By what came before thought, by what came before sight and sound, touch and smell, by the resonance in what came before.

This is how I feel when I read a lot of posts about the Judge Rotenberg Center.

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Close the Judge Rotenberg Center.  For the love of everything holy, close the Judge Rotenberg Center.  Stomp it into the ground and dance on its fucking ashes.

But.

You won’t be done.

You’ll just have eliminated the most obvious of a huge number of places that torture and abuse their patients in the name of treatment.

Skin shock is showy and scary and it makes a good story and it makes it easy to see what is hurting people.

But people can be hurt just as bad or worse without it.

People can be hurt just as bad or worse by places that don’t brag about the torture they inflict on their patients.

People can be hurt just as bad or worse in the institutions everyone loves to love because they’re so beautiful, they have such wonderful grounds, they seem so loving.

You can’t understand, maybe, why this is true.

You think, maybe, that abuse, trauma, PTSD, CPTSD, can be measured in volts.

It can’t.

You think, maybe, that the destruction of lives is proportional to the visible destruction heaped on the body.

It isn’t.

It’s so much more complicated.

I have a friend who gets really upset every time some over-the-top institutional horror story makes the news.  So do I, for that matter.

One part of it is because, obviously, it’s horrible, and we’ve both lived through horrible things.  She’s been to both state and private institutions (and found private ones worse, by the way, so much for stereotypes).  I’ve been to private institutions and private residential treatment facilities and what I like to call ‘community institutionalization’… too hard o explain in such a short space.

I spent most of my teen years in the psych system (and to some degree was exposed before that) and sometimes in mixed psych/DD settings, and pretty much all of my adulthood in the DD system.  I have physical disabilities that could easily put me in a nursing home, and developmental disabilities that qualify me for admission to an ICF/MR.  Staying free takes up more of my energy than I’d like.

I’ve been abused and tortured and traumatized and almost-killed in all kinds of settings, inpatient and outpatient.

At one time in my life, with severe self-injury, I’d have made an ideal candidate for the Judge Rotenberg Center.  I am not somehow different from people who go there.  You’d be surprised at the people who go there and how not-different they are from many people you’d imagine would never go there.

(That’s true of all institutions.  The people who live inside them, and outside of them, are identical in every way.  The only difference is how the support takes place.  When it’s support at all and not just hell on earth.)

Anyway.

What I want to say is.

One reason that my friend and I get upset by these stories is because we’ve lived through some horror stories of our own.

Another reason that we get upset by these stories is this fear we have, that we don’t think is irrational at all.

We fear that when people focus on the outrageous, the flamboyantly awful, then they won’t see the way the outright ordinary, even the seemingly wonderful, can do the same degree of harm, or worse.

The worst harm in institutions is, by the testimony of many, many inmates, not just the physical torture that takes place in some places — sometimes above-board, sometimes secretly.   Often it’s things you can’t even name.  Those things are happening in the JRC too.  Those things hurt people there as much as the torture does.  Nobody is doing a huge campaign to shut down those things.

Many people, if the JRC is closed, will simply be sent to other institutions.

They will then be told that they are lucky and that those other institutions are better.

They may come to believe those other institutions are better.

Those other institutions may actually be better.  But they may not be.  It may just be that the badness has seeped down deep into some underground place where you can’t count it, can’t name it, can’t even describe it, and therefore it…. isn’t there.

And they will continue to get hurt by that.  They may not realize they’re getting hurt by that.  They may attribute the hurt to themselves, to their mental illness, to anything but the environment that is causing or contributing to it.

And that hurt may be harder to recover from than the JRC.

How do I know this?  Because while I was not in the JRC, I was in mental institutions that physically tortured me (not with skin-shock), and was then moved to a ‘better’ place that tortured me in harder-to-explain ways, and hurt me in deeper places, and I learned to say and believe how ‘better’ they were while living how worse they were deep down.  I still live with how worse they were.

And I know many other people who have the same story to tell.

And I know that unlike me, many people who live at the JRC won’t be able to escape the institutional system the way I was able to.  My situation was unique to me.  I didn’t get out because I was better off disability-wise than others, I got out because I was in a particular, unique set of circumstances.  The difference between people on the inside and people on the outside is not their disability.

But once you’re in a long-term institution, it’s harder to get out.  I was lucky, I was usually in a string of short-term institutions (even if I spent longer time periods in them than other people there), then when I was in a longer-term one, my residential facility closed and it became useful to them to decide I was recovered enough to leave, and to “transition” me to a “less restrictive environment”.  Which was still a hellish environment, mind you, but more chance of freedom, there, too.  And I had people around me savvy enough to advise me how to take the chances I had.

And most of the people in the JRC won’t be leaving to freedom, if it gets closed.  They’ll go to other institutions.  And however grateful they are to be out of the JRC, they will get hurt in those new places.  Because that’s what institutions do.  Invariably.  You don’t have to know you’re hurt to get hurt there.  You don’t have to understand how deep the hurt goes, to get hurt there.  You just have to be there.  And you’re often the last person to know how deep it goes, right down to the level of your self and identity and everything important to you.  You can get turned inside out without anyone laying a finger on you.

Nobody will ever be able to pinpoint the institution that inflicts the worst of this sort of damage on its inmates, because this sort of damage is, by its very nature, secretive, even from the person it’s being inflicted upon.  And because nobody will be able to pinpoint the worst of it, there will never be a massive, targeted, decades-long campaign to close the worst of these institutions.  Anonymous will never catch on and take part.  The world will not be outraged by the damage inflicted, no matter how devastating.

And if the people damaged by these institutions show that they are grievously psychologically injured by these institutions, people won’t connect it to the institutions.  They’ll connect it to the nebulous concept of ‘mental illness’, and quite possibly try to construct more of the exact same kind of institutions to deal with it.  Nobody will notice that the ‘increased mental illness’ is correlated with the institutions themselves.  Nobody ever does notice.

Nobody catalogues this kind of damage.  Few people study it.  Few people understand it.  Few people can see when and where it is happening.  Few people can understand the damage in the first place.  Most people who describe the damage won’t be believed.

Worse than merely not being believed:

When we describe the damage inflicted upon us, we are invariably described as ungrateful for the advantages that we had in not being in “a place like the Judge Rotenberg Center”, or not being in “a state institution”, or not being in a place that the world universally recognizes as horrible.  Because some of the worst damage is inflicted on us in places that other people see as wonderful.

They will ignore the abundant testimonials by ex-patients who have experienced a wide variety of institutions.  There are tons and tons of people who have been to both state and private institutions and found the private ones immeasurably more damaging, because the extra funding means extra ability for staff to mess with the heads of the inmates.  There are tons and tons of people who have been to both state institutions and group homes and found the group homes immeasurably worse.  There are tons and tons of people who have been to both locked private traditional-institutions, and unlocked residential facilities and group homes, and found the residential facilities and group homes immeasurably worse.  There are tons and tons of people who have been physically tortured at one institution, moved to another institution where no apparent physical torture was present and found the second institution immeasurably worse.  There are people who have been moved from ‘bad’ institutions everyone loves to hate, to wonderful paradise-like ‘intentional communities’ where they had, in the eyes of others, everything they could possibly want, and described how much more horrible the intentional communities were, the ones formed with the best intentions of parents and staff.

People ignore this.

People ignore this completely.

No, worse.

People ignore this and they utterly disparage any current or former inmate who says these things.  They say we don’t understand what we’re talking about.  They say we have no vision.  They say we have no comprehension. They say we don’t understand how good we have it.

And it’s even worse for people who have only been to the ‘better’ (in the eyes of the public) institutions, and complain about how awful they are.  They’re told that they don’t understand how good they have it, only much worse.  And they are told they should be grateful for what they had, that they wouldn’t last a day in a ‘real institution’.

Hell, I’ve been told I haven’t been in a ‘real institution’ just because I was in locked, private, short-stay institutions a lot of the time.  (And one private long-stay institution that was on a ranch in the country so it didn’t count as an institution, somehow.)  Never mind that, at the time, I was referred to as institutionalized by everyone in the system, including people in these institutions… apparently it’s not an institution until it’s a big-campus state institution.

So people who’ve only been in much fancier, much ‘better’ institutions than I’ve ever set foot in, are told this only ten times worse than anything I’ve ever gotten for talking about my experiences.  Especially if they’ve been in the pseudo-utopian farm communities, or the ‘intentional communities’, or things like Camphill, which are all billed as not institutional somehow even though they totally are.  You can’t change an institution by changing the shape of the building and slapping on a new coat of paint.

Anyway.

People who have been through the worst kinds of hell that institutions can provide are not believed, because the worst kinds of hell that institutions can provide are not things that people outside of institutions can understand in any way.  People outside of institutions want the blood and gore and skin shocks to prove a place is horrible.  They don’t want to understand that there are things more horrible than any of that.  They don’t want to understand.  They just don’t want to understand.

And people in institutions often don’t want to understand either.  I didn’t want to understand what was happening to me.  I wanted to believe that now that I wasn’t being tied down and tortured on a daily basis, then I was free.  I wanted to believe that really badly.  You have a vested interest in believing you’re someplace better now, that things will get better.  Sometimes believing things are better is your only defense against how awful things are.

But once I really got out, and I had to deal with the intense emotional and psychological injury I’d been done by all of these places, the truth gradually began to dawn on me.  It’s easier to heal from physical wounds than it is from psychological and emotional wounds.  It’s easier to heal from the obvious horrors than the hidden horrors that lurk behind the scenes, turning you inside out and upside down, piece by piece, one bit at a time.  You can heal, but I can tell you that it’s not being tied down, not physical or sexual assault, not even the horrifying restraint practices I sometimes endured, not the physical pain, that continues to haunt me.  I mean, it does, to some degree.  Things like that always do.  But there are things that have damaged me deeper, in ways I can’t even articulate.

And my friends and I, when we see coverage like this, we’re so afraid.

We’re afraid of the ‘better’ institutions.

We’re afraid of the public’s idea of what a ‘really bad institution’ is.

We’re afraid of some of the disability community’s idea of what a ‘really bad institution’ is.

The JRC is a really bad institution.  It’s doing that horrible kind of damage at the same time that it’s doing the physical damage.  I can see that.  Because it’s got enough funding, it can really fuck with people’s heads.

But you could force the JRC to remove every piece of physical punishment it owns, even restraints.  And it would still be horrible.  It could even become worse.  Because when places can’t focus on hurting your body, they have more time to focus on hurting your mind.  And hurting your mind does the most lasting damage there is.

The JRC needs to be shut down, period.

But there are places just as bad that will never be shut down if we use the JRC as the model of what the worst kinds of institution look like.

And there are places even worse that will never be shut down either.

And the worst places in the world, generally, are the same ones that will get propped up by the shutting down of the places the public has the most visceral unpleasant reactions to.

There’s problems in the disability community, too, and until they’re exposed for what they are, there will be a lot of difficulty changing things.

There’s… a lot of disabled people out there who engage in the completely unproductive practice of competing to talk about who stayed in the worst institutions, who had the worst treatment.

Understand that when I’m talking about the worst institutions above, I’m not talking about the worst institutions in any kind of competitive sense.  I’m talking about, the worst in terms of the overall amount and kinds of damage done.

I’m not saying that there aren’t people who had worse experiences in state institutions than private ones, or that there aren’t people who had worse experiences in traditional institutions than in pseudo-utopian farm communities.  I’m not trying to negate any one person’s personal experience.  I’m just trying to explain… things are not what they seem, what everyone believes to be true is not necessarily the truth.

But I’ve seen disabled people who compete with each other about things like this.  They say that they, unlike so-and-so, had experience with real institutions.  Or they, unlike so-and-so, had real bad experiences.  Or they, unlike so-and-so, were really traumatized by what happened to them.  That because they stayed for months rather than days, or years rather than months, their experiences were automatically worse and more deserving of recognition.

And there’s… absolutely nothing productive that happens there.  That’s ego-driven bullshit.  It’s not activism, it’s not helping anyone at all.  It’s a competition in self-pity.

So understand, again… when I’m comparing things, I’m doing so not with the aim of undermining any given person’s experiences in their own life.  I’m doing so with the aim of showing people things they don’t want to see.  I’m saying that what most people say is best, in terms of institutions, is often the worst of all.  That often, the most damage is done where it can be seen the least.  People have to understand this if they’re going to have any hope of actually reducing damage.

So close the JRC, close it over and over and over again until it’s really damn closed.

But… don’t focus on it to the exclusion of places just as bad or worse that don’t necessarily look as bad on paper.

Understand that your visceral reaction to the idea of skin shocks doesn’t make it the worst possible punishment that can be devised.  It’s a pretty diabolical physical punishment.  But sometimes — no, more like often or usually — people are damaged worse by things that don’t touch them physically at all.

Your instincts here are not necessarily a good guide to what is truly awful.

And I worry so so much about what will happen to people after it closes.

And I worry so so much about people enduring unspeakable damage, sometimes far worse than skin shock would hurt the same people, in institutions considered progressive and even utopian.

(Trust me, behind just about every utopian institution lies a dystopia beyond imagining.  And I worry about the “He loved Big Brother” effect obscuring people’s views of what actually goes on in those places.)

My worst nightmare.  And when I say my worst nightmare, I mean, these are actually real actual dreams I have that are worse than any other nightmares I’ve ever had.  They vary in content, but they go something like this:

I’m living in a place with lots of other people with disabilities.  There are staff there.  The staff try to give us every freedom they possibly can, at least as visible from the outside.  In one of these nightmares, I’m climbing a tree, outdoors, and totally allowed to do so.  But there is someone following along behind me to make sure I don’t get hurt.  I feel like a child.

I feel like I’m suffocating.  I feel like I’m suffocating in cotton candy.  But I can’t point to anything particular that’s wrong.  There’s this fog that lurks over the entire place.  It’s white, maybe slightly yellow or pinkish white, but mostly white.  And it obscures the ability to see anything.  And it smells like sweetness.  And it feels like death, in the worst possible sense.   But you can’t tell where it’s coming from.  It’s everywhere and nowhere at once.  You can’t see it except in your head, and only out of the corner of your mind’s eye.

Staff are nice to us, in the same way that people are nice to young children.  They giggle at us as if we’re cute.  They hug us a lot.

They also make us do what they want us to do.  It’s not possible to know how they do it.  They don’t use physical torture or restraints.  They don’t even always use drugging or anything like that.  We just… somehow always end up moving in the direction that they want us to move in, so to speak.

When I wake up, I feel an intense longing for the place I just woke up from, just for a minute or two.  And then I realize what’s going on, and I want to vomit over and over and over again until the experience is gone from my head forever.

This isn’t the best description, because the problems of these places can’t be described.  I once spent six days in a place very much like that, though, and the sickly-sweet-death-fog clung to me for years before I could get it to dissipate.

Nobody will ever get the kind of backing to close a place like that, that they will to close a place like the JRC.  Even though a place like that could potentially do more damage than the JRC, after a person is moved from the JRC to a place like that.  And if we close the JRC, it’s quite possible idealistic people will be building places like that to take its place.

I can’t explain why it’s as bad as, ,or potentially even worse than the JRC or a place like it.

I can’t.

But it is.

Please trust me on that.

Please understand what I’m trying to say here, because it’s incredibly important, and not enough people are saying it.  (And no, it’s not “don’t close the JRC” or “the JRC is good”.  Somehow, people are really fond of reducing important, complex things I say to simplistic bullshit like that.)

I’m trying to say this, for the sake of all the people who won’t be helped if we focus only on closing the JRC.

Now I’m going to try to get some sleep again.  I hope I don’t have nightmares.

ETA:  Before anyone tells me, as they always tell me when I say this, that the Judge Rotenberg Center will call attention to the issue and everything will follow from there and the public will be interested in closing all the other institutions then, later, once we get to the JRC first, that’s not at all how I’ve ever seen it work, not with Willowbrook, not with anything.  (And a friend of mine worked in a “good institution” that killed a former Willowbrook client, mind you.  She got fired for trying to stop them from killing her.  So she survived Willowbrook only to get killed by staff in a ‘supported apartment’ group home setting.  So… that’s a very specific example for a very specific reason.)  The public doesn’t want to close all institutions when they hear of things like this.  They want to make good institutions and then forget about the matter.  And the good institutions can be worse than the old ones in many ways.

[This post was originally written on December 21, 2013.  I completely forgot I wrote it, but it is always a good time to resurrect a post of this sort.  Because people always need a reminder of certain realities about  institutions.  They’re all too happy to forget, that much never changes.]

Your politics have a problem when they contradict the real-life experiences of the people they’re supposed to be about.

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Your politics have an even bigger problem when the people they’re supposed to be about, become afraid to describe our real-life experiences, for fear of angering the echo chamber.  And when we become afraid to describe our real-life experiences, that reinforces your idea that or real-life experiences don’t actually exist.  Which reinforces the idea that you’re right.  Which makes you feel even more justified in attacking anyone who happens to contradict you for any reason at all.

I hate this.

I hate it because I am afraid to say certain things about my life.

Because I don’t know if I have the strength to handle the consequences if I do.

Because I understand, I more than understand, why the echo chambers believe as they believe.  I understand what’s at stake.  I understand why it’s so easy to believe that contradiction is a threat to your life, because in some areas, it almost, sort of, can be.

And yet I also understand what’s at stake when all of us little people on the ground aren’t allowed to talk about our lives.

And there’s more at stake there than you think.

When we can’t have a conversation.

When we can’t bring our little packages of our truth from our lives to the table, and unwrap them together, and look at them, and learn from each other, without judgement.

Then something is dying, and something has died, and something is dead.  And your entire echo chamber smells of rotting flesh.

But we are still alive.

And we still pass around our little packages to each other.

But instead of doing it in the full light of day, where everyone can see and benefit from it.

We do it furtively, at night.  We look around, make sure nobody is looking, tiptoe to the neighbor’s house, sneak in through the back door so nobody sees us coming.

We send each other packages in the mail with no return address.

We write our stories in invisible ink.  We write them in code.

You should know all about this.  This is what it was like for all marginalized people, before your movements got started.

But now, instead of just hiding from the oppressors, we are hiding from your movements.

You might want to take a really good, long look at why that is.

I once took part in a disability studies group we called Disability Studies Prometheus.  Because we were people traditionally left out of disability studies.  We were cognitively disabled, or too sick to make it to class, or other things.  We called ourselves Prometheus because he stole fire from the gods for the benefit of humanity.  We were stealing the fire of knowledge from the mainstream disability studies programs that wouldn’t let us in — our IQs too low, our behavior too wild, our bodies too unreliable for the university setting.  So we stole what we could from them, and we made the fire our own.

Don’t for a moment believe that this isn’t happening everywhere.

There are disabled people stealing fire from the mainstream disability communities.  Trans and genderless people stealing fire from the mainstream trans communities.  People of color stealing fire from the mainstream PoC communities.  Poor and working-class people stealing fire from Marxist and other anti-classism echo chambers.  LGB people stealing fire from the ivory towers that theorize about queerness all day.  Women stealing fire from mainstream feminism in all its incarnations.

More than that, there are marginalized people stealing fire from the marginalized people who have gained power.  And the ones stealing the fire don’t always stick to the communities we’ve been taught to stick to.  So you have nondisabled trans women of color stealing fire and bringing it back to cis men with profound multiple developmental disabilities, and both of them learning to tell their stories together.  And you have elderly gay white rich healthy men stealing fire and bringing it back to children of color living on cancer wards.

All around you, in the night, where you can’t see us.

We are all around you.  We are carrying little packages around.  Packages wrapped in plain, nondescript, brown paper.

Those little parcels will overturn the world.  They will overturn everything you’ve ever worked for.  And they will make it better.

Because each little package contains the story of one of us.  And it is a story untainted by ideology.  It is a story untainted by who you say we should be.  It is a story that says who we are.

And our stories.  Our stories as ourselves.  Our stories without someone to look over our shoulder and tell us that it can’t be the way it actually was.  That the way it actually was, will automatically hurt someone else.

And we put our stories together.  Even if we have to do it in the dead of night.  Even if we have to do it in code, whether low-tech ciphers or high-tech encryption.  Even if we have to send it to each other anonymously, one by one.

We are cautiously, furtively, forming real communities.  Communities that are about helping each other, not about tearing each other apart, or about finding new people to tear apart.

You can even join us… if you learn to resist your impulse to jump down people’s throats the moment we don’t comply with expectations.

But the bottom line is: We are out here.  Nothing you can say or do will stop us from carrying around our little packages, handing them out to each other, reading them, discussing them.  We are being.  We are being joyously and cautiously, furtively and with abandon, but we are being.  We are handing out manuscripts and poems, index cards with recipes on them.  We hide them, we bury them, we slip them into our bras, into the back pockets of our briefcases and false drawers in our luggage.

And then we pull them out.  And we show them to each other.  And we read them.  We read them understanding each person as an individual, without judgement except where absolutely necessary.  And we find ways of making connections.  We find ways of making communities.  Not based on shared individual traits, so much as on a shared desire to understand and protect one another.  Shared understanding, based on learning about each other.  Even the parts of each other that would seem inconvenient at first glance.  Even the parts of each other, perhaps especially those parts, where our stories seem to contradict.   Because it’s those parts that show us where we most need to grow, and understand, and learn to see each other in new ways.

But we form communities because that is what people do, when we begin to understand each other in depth.  To understand each other enough to care what happens to each other.  And when we form those communities, we do so because we’ve learned so much about each other, on a deep enough level, that we can’t avoid caring about each other.

The most important part about communities formed in this way?  They’re not about ideas.  They’re about people.  Every single community member counts, and every single community member is the reason that we have come together in the first place.  Those packages we have exchanged are our stories as people, our experiences in the world, our lives.  And everything that happens in these communities are based around that.  Not around ideologies, not around constructing the perfect set of ideas.  Not around making sure that everyone’s thoughts are pure and free from dissent.  But around making sure that each human being is valued to the fullest extent possible.  Even if our stories seem to contradict each other.  Even if our stories seem to contradict the ideologies we remember from before.

This is another way to do things.  This is already happening, right in front of you.  I am doing this.  My friends are doing this.  We are doing these things because we are being harmed so much by ideologies, that there has to be another way, there has to be a way that we can change the world and survive doing it without selling our souls.  So if this seems like a far-off utopian dream, know that it is happening all around you.  It’s happening offline, it’s happening online, it’s happening right under your feet.  I’m doing it right here, right now.

The real scarf.

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This is a scarf my mother bought me during the holidays last year:

Me with a red scarf around my neck, with fringe on the end

Pinned to it was a note saying “to wrap around your heart”.

I cried.

Because it was a reference to this comic I wrote, about my experiences with delirium.  The scarf in the comic comes to symbolize a connection to the deepest parts of reality, the only thing I had to hang onto when I was severely delirious and disoriented.  And in real life, I use this scarf the same way.  I wear it when my mind isn’t working quite right and I want to maintain my hold on reality.  Things like this are really useful.  And I cried when I first received the scarf, it was one of the most thoughtful gifts I’ve ever gotten.

Love poem for people like me.

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This is what love can be:

I taste with the soles of my feet. I taste dirt when I walk, but when my feet touch your skin, I taste fruit and sweat. Your entire lifetime caresses its way through the scent of your hair. I want to lay my face in your hair forever, smell your life, taste the tops of your feet with the bottoms of mine. I want to smell that scent that only enters your sweat when we touch.

And then I want to curl in on myself until I become a marble, or a rock. And place myself in your hand. And you can put me in your pocket.

When you need reminding that something in this world is real. When you need reminding that you are real. Take me out of your pocket and hold me in your hand. Feel the deep bass note resonate throughout our shared existence.

This is what love can be.