Reviving the concept of cousins.

Someone decided this was going to be Autistic History Month.  I had another contribution I was going to write.  In fact, it’s already almost written.  But I ended up writing this instead.  At first glance, it seems to be specific to autistic people.  But while it applies to autistic people, it also applies equally well to a lot of other disabled people, so it’s not necessary to ignore it because you’re not autistic.

There’s something the autistic community^⁠1 has lost.  And I think it’s high time we got it back, possibly in an improved form.  It’s the concept of cousins.

It started with a man who had hydrocephalus.   I met him once, after the events I’m going to recount were already in the distant past.  But I’m leaving his name out in the interests of privacy, given that when he wrote about these events in Our Voice^⁠2 he used a pseudonym.  Anyway, I think he came to the autism community, and later the autistic community, because he was a professional whose job involved autistic people somehow. But I don’t know for certain.

What I do know, is once he discovered the autistic community, he stuck around.  While he always made it clear that he wasn’t autistic himself, he found that he identified with autistic people a good deal due to his hydrocephalus.  Autistic people, likewise, found that they could identify with him.

At one point, there was an autism conference where a lot of autistic people attended.  Including Kathy Grant (now Xenia Grant), one of the co-founders of Autism Network International.  Jim Sinclair, another ANI co-founder, was there as well, along with several other ANI members.

To understand the tone that all of this took place in, it’s best to understand a bit of Xenia’s personality.  She is possibly the friendliest person I’ve ever met.  She’s also one of the most unapologetically autistic-looking people I’ve ever met: She looks autistic (in physical actions, in conversational topics, in what parts of the world she reacts to and how), she knows she looks autistic, and she has no problem with this at all.  And she has such an infectious exuberance and enthusiasm for life that it’s hard not to be cheerful when she’s around.  All this adds up to the fact that I’ve never met or heard of anyone who didn’t like her.^⁠3

So anyway, I’ll let Jim Sinclair tell the story, since xe was there and I was not.  This is excerpted from xyr long but important article, Autism Network International: The Development of a Community and its Culture:

Another development during the 1993 conference was the recognition of a new segment of the ANI community, and the adoption of a new term to refer to it. One of the people who had been corresponding with ANI members online, and was attending this conference to meet with us in person for the first time, was not autistic. He had hydrocephalus, another congenital neurological abnormality. In our online discussions he had been noticing many similarities between his experiences and characteristics as a person with hydrocephalus, and the experiences and characteristics of autistic people. At the conference he met Kathy, who was not online at the time and did not know who he was. He introduced himself to her, explaining that he was interested in exploring similarities between himself and autistic people. He briefly summarized the effects of hydrocephalus in his life. Kathy considered this for a moment, and then warmly exclaimed “Cousin!” (Cousins, 1993). From that time on, the term “cousin” has been used within ANI to refer to a non-autistic person who has some other significant social and communication abnormalities that render him or her significantly “autistic-like.” The broader term “AC,” meaning “autistics and cousins,” emerged soon afterward.

The term AC is further documented on Jim Sinclair’s personal website:

Cousin refers to a person who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.  Some conditions that may lead to cousinhood include Tourette syndrome, hydrocephalus, Williams syndrome, and some learning disabilities.

AC stands for “autistic and/or cousin.” “AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.

[from A Note About Language and Abbreviations Used On This Site by Jim Sinclair]

As I’ve noted many times before, the online autistic community often has a very short memory.  I can remember when ‘cousin’ was a well-known term and used widely, even outside of ANI-related circles.  And then, gradually, its use died out and a lot of people seemed to forget — or not know in the first place — it had ever existed.

I only ever saw one criticism of ‘cousin’ that made sense to me.  And that was more about the way people used the idea, rather than the idea itself.  This was, that people used ‘cousin’ in a way that made it sound like autism was the one central way to be neurodivergent, and everything else was judged by whether it was similar to autism or not.

If the ‘cousin’ idea is brought back, I hope that it won’t be seen as exclusive to autism.  It can be used for practically any form of neurodivergence or similar experience of the world.

For instance, I experience delirium pretty regularly if I get sick enough.  This is because, as far as anyone knows anyway, delirium leads to brain damage, which leads to further susceptibility to delirium.  This is especially true for severe or prolonged delirium like the type I’ve experienced at times.  Delirium is a set of cognitive and perceptual changes brought on by a physical illness or injury of some kind.  The part about being directly linked to a physical problem is important.  The cognitive problems can range from mild confusion or disorientation, all the way to hallucinations, delusions, and large chunks of time lost altogether.

On a purely medical level, there are important differences between delirium and psychosis.  Some of those differences are subtle, and some are pretty dramatic.  Failing to distinguish them medically, could lead to death in extreme cases.  But experientially?  When I talk to people who have experienced psychosis, their experiences are closer to my experiences of delirium than any other group of people I’ve met.  So you could say delirium is a cousin of psychosis — the differences may be important on a medical level, but when it comes to understanding my experiences and how to deal with them, people with psychosis are the most likely to understand.

I’m going to quote one part of what Jim Sinclair said above in xyr definitions of AC and cousin, again, just to emphasize it:

“AC” and “cousin” are sociological terms describing status within the ANI community, rather than clinical diagnostic terms.

That means the important part of cousinhood isn’t what your diagnosis is.  It’s whose experiences you identify with and gain meaning from.  I’m not sure it’s a coincidence that at the same time that ‘cousin’ started disappearing as a concept, large parts of the autistic community became less focused on being a community of people who support each other, and more focused on being as exclusionary as they could get away with.  To the point where I’ve run into people who worry that they’re not ‘autistic enough’ to flap their hands when they’re happy, and that flapping their hands would be the equivalent of cultural appropriation.  Because people have told them that, or said things like that in their presence, enough that they’ve completely internalized it.  As if autistic people have some kind of monopoly on hand-flapping.

I’ve said this many times before, about concepts like autism itself:  These concepts are only useful inasfar as they help people.  That can mean:

• helping you understand yourself better
• helping you understand other people better
• helping you meet people who are more likely to resemble you in ways that are important
• helping you obtain services you need in order to survive, get a job, get an education, get legal help if you’re discriminated against or targeted for hate crimes, etc.
• helping you advocate for yourself if you run into accessibility problems
• helping you learn skills that you would otherwise find too difficult to learn, as well as skills you may never have heard of without meeting other people like yourself
• helping you in all kinds of other ways, the point being, these are good things in your life, rather than destructive things in your life

On the other hand, these concepts can hurt us, and that’s where they become dangerous.  This can mean:

• people becoming snobbish about being more autistic, or less autistic, than other autistic people
• people defining the boundaries of who counts as autistic and who doesn’t, for reasons that have entirely to do with their own egos and insecurities
• people trying to put limits on what you are allowed to be able to accomplish in your lifetime, and still be counted as autistic
• people excluding you for no other reason than that you’re autistic
• people treating you as subhuman, an unperson, because you’re autistic
• not believing yourself to be fully a person, because you’re autistic
• limiting your own ideas of what you’re capable of, because you’re autistic
• forcing yourself, or being forced by others, into fitting certain stereotypes, because you’re autistic
• feeling like you have to pretend that certain stereotypes don’t apply to you, even if they do, because you’re autistic and you feel like you “shouldn’t” be too stereotypical
• feeling like you have to defer to professionals who have studied people like you, in describing your own life, because clearly they know more about autism than you do, which means clearly they know more about you than you do
• harming you in all kinds of other ways, the point being, these are destructive things in your life, rather than good things in your life

And you can substitute nearly any other category of person in place of autistic up there.  The basic pattern works the same:  Pretty much any label that defines a group of people, has the possibility to do good and the possibility to do harm.  The only times there’s any point to using the label in question, is when it’s doing something good for you or other people.

Bringing people together with words like ‘cousin’ allows people to identify with autistic people, without putting pressure on them to figure out instantly whether they are actually autistic or not.  It allows people to acknowledge that most skills and difficulties autistic people experience are not totally unique to autistic people.  It allows people to acknowledge the vast grey area that is both outside of standard definitions of autism, and outside of neurotypical, but that resembles autism in important ways.  It allows people to acknowledge that the boundary between autistic and nonautistic is fuzzy at best.  And it does all that while contributing to people understanding more about themselves and each other, and bringing people together into friendships, communities, and other relationships they might not otherwise have.

So I really believe that it would not only be a good thing to remember the word ‘cousin’ and what it used to mean, but to revive it and expand its use for more than just autistic people.  It allows for so much more flexibility than people are currently given about a lot of different identity groups, and that’s important.  So if you like the idea of cousins, by all means, use it and adapt it as much as you want, for whatever groups of people in your own life you think it would best apply to.

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¹ For the purposes of this article, ‘the autistic community’ refers to relatively mainstream online self-advocacy and sociial communities made up mostly of autistic people.  There’s a lot of different autistic communities out there, both recognized and unrecognized, online and offline.

² The newsletter of Autism Network International.

³ Actually, come to think of it, I’ve heard of exactly one person who didn’t like her.  It was a self-loathing person with autism who said they were embarrassed by her.  That’s an unfortunate but common reaction that those of us who are visibly “different” get from other people who want to forget their own difference, and who find that we remind them too much of parts of themselves they’d rather forget.  But for someone as social as Xenia, to have heard of only one person who disliked her for her unusual mannerisms and reactions to the world is a testament to her extremely friendly personality.  Ordinarily, if I mention Xenia to anyone who’s met her, they sort of light up inside just remembering her.  I don’t think it’s coincidence that someone that friendly is the one who thought up the concept of a ‘cousin’.

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When Orange Speaks Louder Than Words

Orange is the color of Autism Acceptance Month.  Because it’s the opposite of blue, and blue is the color that everyone is told to wear for Autism Awareness Month.  Which kind of sucks because my favorite colors, and nearly all of my clothes, are brown and blue.  And I used to really hate orange.  Sometimes I hate the term Autism Acceptance, too — I like the idea behind it, but I don’t like the way the term has become a meaningless buzzword in some people’s mouths.  Whether it’s parent groups who throw the word ‘autism acceptance’ around to sound current but don’t actually accept the slightest thing about their autistic children, or whether it’s autistic people who’ve fallen in love with the words and forgotten the meaning.  Either way, I like it as a concept but not as a buzzword.

Anyway, I hated orange.

Then my father died.  I was very close to my father.  As a way of remembering him, I began to wear his clothing. My mom sent me a bunch of his shirts, suspenders, watches, and other assorted clothing and jewelry.  And I began to wear his clothes, regardless of color.  

My father wore a lot of very colorful clothes.  I had to get used to that.  But most of the colors he had look surprisingly good on me.  This did surprise me because his skin was a very different color than mine, much darker.  But someone pointed out that while our skin was different in terms of darkness, the actual hue of our skin was nearly identical.  Which goes a long way to explaining why nearly any color that looked good on him, looks good on me.   The only place we seem to go wrong are on certain pastel shades that just look better against his shade of skin than mine.

Wearing my father’s clothes is more than a symbolic act of remembrance.  It helps me get inside of him.  It helps me find him inside of me.  It helps me find the parts of him that I didn’t even realize were there until he was already dead.  There’s something about it that makes me love him even more, makes me comfortable in my own skin, makes me see the many things about us that are alike as well as the differences.

And orange, most of all, has come to symbolize that entire process for me:  Finding something totally unexpected about my father that was also inside me all along.   Finding that many shades of orange (mostly darker shades, definitely not pastel peach shades) look good on me, sounds like a superficial thing.  But when it’s in the context of my father’s death and the meaning he had and continues to have in my life, there’s nothing superficial about it.  It’s about as deep as things get.  And that’s unexpected as well.

By the way, one thing I never take off is the circular necklace you can see in one of the pictures.  It’s a see-through locket containing hairs from my father’s beard, that he agreed to send me before he died.  I take it everywhere with me, and even a year ago when I was too delirious to understand that my father had died at all or what the necklace was, I still managed not to lose it despite losing some very important items during the same hospital stay. 

So I now appreciate orange a lot more than I used to, and I now have more orange things to wear this month.  Both because my father gave me orange clothes, and because since coming to view orange as symbolic of all these things, I have started making myself more orange clothing.  The shawl pictured above is something I crocheted myself, and the crochet project I am working on in the last picture will be a cardigan made out of bamboo yarn.  I’ve made other orange things as well.

I had other things planned to post this month.  I had a lot of things planned.  Like the song says, “Life is what happens to you when you’re busy making other plans.”  I’ve had tube problems and problems with my steroid levels that have taken up a lot of my time and energy lately.  So I think the very long post I had planned for Autism Acceptance Month is going to turn into a Blogging Against Disablism Day post for May 1st.  And this post will have to suffice for an Autism Acceptance Month post — right at the end of the month, of course.  But all these problems have made my inertia twenty times worse than usual, so getting posts out at all is a miracle and it’s a good thing that the posts I am talking about that I’d planned, are mostly already written months ago, and then stored in anticipation of this month.  Because I rightly guessed that I wouldn’t be able to write much for whatever reason when the time actually came around to have things ready.

Orange also stands for fire.  I used to think that fire meant the kind of anger problem I used to have, and I was afraid of my own fire.  But someone told me that my anger problem was misdirected fire.  That real fire, properly channeled, could mean something closer to passion.  And that’s when I began to truly integrate fire into who I was, and it flowed through me, and it was something I’d been missing for a long time.  Adrenal insufficiency sometimes feels like it tries to drain me of that fire, when I get close to an adrenal crisis, it’s like everything goes flat and deflated.  But when fire is properly flowing through me, it feels like finally being alive again.  So that’s another thing orange has come to mean to me. 

The things I’ve found about my dad in myself, by the way, are not irrelevant to Autism Acceptance Month.  My father and I are both autistic, and we share a lot of traits.  One of the traits that we share that I treasure the most, is our tendency to communicate with objects.  As in, both communicate by means of using objects, and experience communication (it’s the only word that really fits) between ourselves and supposedly-inanimate objects.  I knew to some degree this was true of my father, but it became much more apparent as he was dying, and even more apparent when I received many of his belongings after he died.  I arranged some of them into a memorial shrine, and any time I want to see him all I have to do is look through the objects and I can always find him by sensing the connections between them.  

Not a lot of autistic people talk about this, but a lot of autistic people very much do things like this.  And many people have told me they look at objects differently after seeing how I have interacted with objects after my father’s death.  People are used to seeing objects as dead in themselves.   And they are used to seeing interaction with objects as inferior to interactions with people.  They are used to seeing attachment to objects as an ‘attachment to material possessions’, like a consumerist thing.  So they are legitimately surprised when they see someone doing it completely differently than anything they’ve ever seen before.

Some people react well to that and some people react badly.  I’ve been lectured more times than I care to count, on how objects are not really alive and you can’t really interact with them.  Usually they talk to me in the same way they would talk to a five-year-old who believes in unicorns.  Other people have explained anthropomorphism to me at great length, totally neglecting the fact that I’m not in fact attributing human qualities to objects.  I interact with them, they interact back, I see them as alive, but being alive is not a human-specific quality.  And they are alive in a very specific way that has nothing to do with humans and nothing to do with the actual categories of animate and inanimate beings in general, and I interact with them as what they are to a degree that most people who see them as dead probably don’t. 

And usually the person doing the explaining manages to be incredibly condescending both to people like me, and to cultures that don’t differentiate as much between living and non-living creatures as modern Western culture does, or differentiate much differently.  The view is that we’re just simple-minded idiots who don’t yet know enough, aren’t yet highly evolved enough as a person or as a culture or both, to have figured out what Western science knows.  Never mind that their view of how we see things is usually mind-bogglingly simplistic in and of itself.

For some reason, such people seem to feel almost compelled to force their worldview on me.  Like I’m just one tiny little person who happens to be moving through a world full of people who mostly don’t share this worldview.  I’m hardly a threat to anyone.  But they seem to feel threatened enough that they have to quash any sign of difference anywhere they see it.  And I’m not just talking about nonautistic people, I’m also talking about autistic people who don’t happen to share this particular autistic trait.  (Because no autistic trait is universal, and quite often autism involves opposites a lot — so that both a trait and its polar opposite will be common autistic traits.  Sometimes even both showing up in the same person at different times.)

But what really amazes me are the people who are willing to have their mind changed about objects after they see how I interact with them.  They see that there is respect there.  They see that there is depth there.  They see that like many autistic people with similar traits, I move through a very sensual world full of richness and depth.  They see that I use objects to communicate with other people, to say important things that I can’t say with words.  They see the way I use objects to remember my father and to interact with him after his death.  They see that there is something deeply real here.  And they come to respect that, even when they don’t fully understand it.

And I never set out to cause them to respect me.  Any more than I set out to convince one of  friends that being gay is not a sin.  I actually told her I didn’t mind that she thought it was a sin, as long as she didn’t interfere with my life on that basis, and went on living my life around her as I was.  She said that just knowing me changed her mind about gay people on a religious level and on other levels.  And that’s not something I ever set out to do, in fact I was careful not to set out to change her mind.  But it happened anyway.  And that’s how this thing with the objects has happened:  I never intended it, in fact I never would have known the change was happening in some people if they hadn’t told me in private that I had changed their entire way of viewing how people interact with objects. But they did change their minds because of me, intended or not.

And I think that’s really important.  Sometimes people don’t come to accept autism — or aspects of autism, as the case may be — because we’ve been shoving things in their face.  Sometimes they come to accept autism, and autistic people, and autistic people’s ways of being in the world, because they spend enough time around us that they get to see us in a well-rounded context.  Not in terms of rhetoric but in terms of real life.  And seeing us, seeing how we live, seeing that our ways of doing things are legitimate even if they’re different than anything they’ve ever imagined before, that can be far more important for some people than anything we could have to say about the matter.

If saying things weren’t important to me, mind you, I wouldn’t be a blogger.  I may be a reluctant writer at times, but I’m definitely a writer.  But I also think there’s things in the world far more important than words.  And I also think there’s many different ways to communicate something, and writing is only one of them.  Not everyone can write, but everyone can make a contribution, deliberate or not, to the acceptance of people like us in the world at large.  And as writing this kind of post has become more and more difficult for me — it was never easy, but it’s getting much harder with time — I’m learning to very much value my ability to just exist and get things across by the way I exist around people.

There are a lot of things about being autistic that are hard, and I have to confess that lately it’s the harder things that have caught my attention more often.  The difficulty of keeping in touch with even my closest friends, to the point I’ve become almost completely socially isolated lately.  The ever-increasing level of inertia, which has snuck up on me because it looks very different after severe adrenal insufficiency completely reshaped the way I experience stress on a subjective level.  The stress levels that come not from emotional stress but from the sheer strain of having to function on an everyday basis — walking from one room to another, getting in and out of bed and chairs, going to the bathroom, making words, changing feeding tube dressings upwards of twelve times a day, going to new places that are visually overstimulating, anything involving getting information into or out of my brain, thinking on an intellectual level.  Things that most people don’t even know are skills, let alone difficult ones, because most of them are done automatically.  And all of these things are contributing to it not always feeling great to be autistic lately.

But orange brought me back to my father, and my father brings me back to objects, and objects bring me back to that rich world that my father and I both take part in.  Which brings me back to the way that just being who I am in front of people has changed their entire way of viewing objects and people’s relationships with them.  And that’s the good side of autism, and this is one of many ways that autism acceptance — the real thing —  can happen.  One person at a time, through living our lives as authentically as possible so that people can see exactly who we are and how we do things.  And when they see that, when they see who we are and how we live, some of them come to accept us on a deep level.   And not a lot of people are talking about that.

So I guess I’m glad for orange after all.

Edited with BlogPad Pro

Unfolding

Me with Fey sitting on my shoulder.

Sometimes I want to unfold
The beauty of the world
As if it was the most intricate
Origami flower
That had ever seen the light of day

Then I want to wait
And wait
Until the flower blooms for real
Until its velvet black blossoms
Tinged with purple edges
Grow fuzz that you can run your hand over

And I want to hand it to you
And watch you rub the fuzz
Against your cheek
Against your lips
Against your nose —
The yellow-black stamens tickle

And then fold the flower
Back into paper
And put it in my pocket
For safekeeping

I would make more of them
And write secret notes
That only some people could read

They would say things like:

“The most beautiful things
Are concealed all around you.”

“You are a flower and
This is how you become real.”

“You are unfolding
Just like this.
Don’t hurry,
Don’t wait.”

I would hide them in plain sight
And I would hide them in places
That only the curious and observant
Would bother looking

I would hide them in places
That can only be found
When doing shit work
For 22 cents an hour

I would hide them so that each person
Stood a chance of finding at least one
Just one
That told them what they needed to hear
Right now
Just then

Unfold them, they become real flowers
Fold them, they become folded paper
You can do this as many times as you need
Because they are magic flowers

And if you get good at looking and listening
With more than just your eyes and ears
You will find these creations everywhere
Left by someone
With far more magic
Than I will ever possess

You know when you find one because
Suddenly something ordinary
Becomes extraordinary
Suddenly you’ve been let in on a secret
About something you’d seen before
But never seen before

It can be anything from
A spray of mud on your pants
To a pair of decorated crutches
To a butterfly

It doesn’t have to be pretty on first sight
Many times it isn’t
Many times it seems horrible
Until that flash of inspiration
When it unfolds into a flower in full bloom

And then every texture is like suede
And every color is like the deepest blue before dawn
And every taste is like boiled collards with butter
And every smell is the fur behind a cat’s ears

I wish I had the magic necessary
To make these things myself
To fold reality into paper
And leave it everywhere for people to find

As it is, all I can say is
Someone has already done it

You can find these magic folded papers
On the inside of a zero
In the yawn of a kitten
In a feeding tube
In a wadded up rag
In a tangled old root
In a leaf that skips down the sidewalk

And all of them are flowers
And all of them are there to tell you
There is more in this world than you can ever see
There is more love
There is more light
There is more beauty

And you are part of it
Always
Even
(Especially!)
When everything seems to be
Crashing down around you

Can you accept
This magic spell
This gift
From the world
To me
To you?

Tube Love

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.

What came before.

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.

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

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.

Love poem for people like me.

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.

Empty Mirrors and Redwoods

This was originally written and posted elsewhere on February 25, 2012.

This is in response to a quote:

“When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.” —Adrienne Rich

This is the story of my life. Not just teachers. Everyone. Everywhere. Not a moment. A lifetime.

Which is probably why one of my biggest goals in learning to communicate with people, in both standard and unusual ways, has always been to shout to the world that I exist, who I am, and that I am not going away without a fight.

It’s also why it hits me so hard when anyone tells me I’m impossible. They usually do it in the most fleeting ways. As in they don’t even give me a full once-over. In a moment they have decided I don’t exist. Sometimes it’s a matter of fact statement. “Real people don’t work like that.” Other times it is accompanied by some of the worst bullying I have ever encountered. “Real people don’t work like that. And I will stomp you into the ground for having the audacity to be who you are.” Any way it happens it hurts. Not just for me. I’m trying to make the way easier for others like me. I don’t want anyone ever to have to go through this again.

There is nowhere I can go that this won’t happen. Even if I try to go away from people, they can still follow. The closest I’ve ever come was when I first moved out on my own. I lived alone with my cat in a redwood forest. I would turn off the Internet, go outside, and talk to the rocks and the trees and the slugs and the fungus.

I’d fill my pockets with rocks. Or sit on the ground and stack rocks all over my body. And the rocks would tell me about my own solidity. They’d tell me about being part of mountains. And avalanches and mudslides. And volcanoes. And all the other things rocks know about. A small piece of granite in my hand would tell me about the smell of sun on a granite mountainside.

They told me I was part of the world too. Of the larger world. Many people say the world when they really mean the social world of human beings. The world is so much bigger than that. They told me that even if no human being told me this in my lifetime, that I do have a place in the world. A very small, particular place just for me. They said that everyone has a place like that. And that when I am done with my place in the human world, I will turn into all the animals and fungi and plants and microbes that will likely eat my remains. And then I will have other places in the world entirely. I may yet be a redwood tree when I grow up, just like some rocks turn into sand in the ocean.

Until now, I’ve never been able to fully express what all those rocks and stuff did for me. It was a surreal period of time. When I was online or with people, the main message I got was I didn’t exist. And even when the people weren’t around, their general behavior patterns followed me telling me I was a worthless, unreal waste of space. Then I’d go out to the rocks, in my driveway and elsewhere, and suddenly I had a place in the world and everything made sense. They didn’t tell me all these things in words. They told me through the patterns of what they were and where they’d been and what connections they had to other things. It’s hard to translate it into words or ideas, and harder still to translate into the dead, disconnected world that the mainstream culture wanted me to believe in.

So the rocks, the slugs, the dirt, the trees, and the fungus seemed to have no problem with being in the same world as me, and letting me know in so many ways that I belonged there. It was human beings that shut me out. The only thing I could write of it at the time: “I walk inside and I disappear; I walk outside and I have a place in the world again.”

But it wasn’t as simple as momentarily looking in a mirror and seeing nothing. My friend said it was more like looking at a painting without them in it and then being told it was a mirror. For me, it was not seeing myself no matter where I looked. I mean, on a deep level, I knew that I existed and that one day I would find at least one person like me. Knew it bone-deep, though I never imagined how much like me they’d be. But on the surface of my mind, it felt quite different.

On the surface, it was terror. Absolute unreasoning terror. That I might not really exist at all. That I might just be a thing. Forget not seeing myself in the mirror, I didn’t see myself anywhere. I felt like I was floating in a dark place without being able to perceive myself or anything around me. Or falling, living in free fall. Once it really started hitting home, I became terrified for my survival.

Because my life was not full of examples of anyone like me. Education was one way. I started junior high, high school, and college but I never truly finished them and deep down I knew I’d never finish. (Don’t make me explain the twists and turns in my educational history that made that statement possible.) I spent the majority of my teen years in either no school, institution schools, or special ed. And I knew that to the rest of the world none of us were real. And just — I can’t explain it fully — this caused an intense, deep terror of what my adulthood would be like.

After I fell off of the conveyor belt of life that all the real people were on, I was presented two, and exactly two, choices for my future. The first choice was that I could remain as I was, and go to an institution forever. The second choice was that I could get better and live on my own with no disability-related support. People called the second one words like “hope” and “we believe in you”. I called it a mirage. And it was really that second option that drove me to suicide over and over. Because that was the option I knew I would never become. And having it thrust in my face and called “hope” only gave me the message “hope is impossible”.

I knew this because I could see things about myself that none of those hopeful people could see. I saw that every month that life went on I was being expected to climb harder and run faster. And I saw that the things preventing me from doing those things… even if my skills were staying the same I’d be dropping further and further behind. But my skills were getting worse. And I knew exactly what that meant in terms of how feasible choice #2 would ever be.

Somewhere around when I got diagnosed, I coincidentally found Nobody Nowhere in a library. I brought it home because of nothing more than the picture on the cover. By the first page, I was in shock. By the next page, I cried. This was my first ever glimpse of myself mirrored in the eyes of another human being. I got profoundly lucky. I collect autiebiographies now, I think I have over a hundred, and that’s still one of the closest to my experience. If basic types of autism truly exist, she and I are in the same one. We are different in many other ways but not so much in that one. The first time I ever, ever was told by a human being in any form that I existed: I think I was 15 years old.

Somewhere in there I began making plans to escape. To run away to the woods and find some way to hide there and scratch out a living. But every time I tried going, I was caught long before I got there. People began making theories that something in my brain caused me to wander aimlessly with no real purpose in mind. They got me a bracelet that said so, that I couldn’t take off. Just one more mirror I didn’t exist within.

One reason I write about my experiences is to force the world to acknowledge who I really am and that I exist, that we exist as people like each other in these ways. But wrapped around that just as much is the desire to do for other people what Nobody Nowhere did for me. I know that a lot of people like me, given our language issues, don’t write a lot. And I want to be one of the ones that does, so that other people will benefit. And I don’t mean just about autism, although that will always be a large part of it. I mean everything in me that most of the world doesn’t acknowledge as a possibility let alone a large number of real life people. This happens to all marginalized people, and it also happens to people who just have things going on that are rare or contradict mainstream culture or the culture they live in. And I’m all of those things and I know how hard it is and I want to make it easier.

I also want to do something else. I’ve long had a video project in mind, but I don’t know if that will ever happen, so I do it in other ways too. I want people in the position I was in growing up, to know that choice #1 and choice #2 are not the only viable choices for a person to have. People kill themselves when they think they don’t have choices. And there are not enough choices in the world — but there are more than two.

Some truly nasty people once had a tittering little chat over my having said something like this once. It went something like “Why does she think her life is so great? She’s on welfare. She’s in public housing. She’s poor. She’s always going on about how wonderful this is, but that’s a shitty excuse for a life.”

I can’t even begin to explain the screwed-up worldviews that led to this little discussion. Including a complete misunderstanding of what does and doesn’t make disabled people happy with our lives (link to PDF). But really what it comes down to is this: Growing up, I learned that if I remained significantly disabled I would be in an institution. No other options. I knew long before anyone else did that cures were a pipe dream. I’d try hard to act like whatever they tried on me was making me better but that was bullshit and it fell apart fast. There was no such thing as a combination of freedom, and being unable to work or take care of myself. None. It wasn’t even imaginable. Nobody even made me aware of disability benefits or daily living services until I met other disabled adults.

To have no good options is a terrible thing. I want people to know there are options. They don’t work out for everyone. But to have the knowledge that there’s one option wakes your mind up and tells you there might be more. To actively look beyond the borders of your imagination. To be creative and keep trying. I know that the options I have now may disappear if the Republicans get their way, if the government collapses (even in a good way), if the economy gets ever more trashed. But my experiences since adulthood have stretched my imagination and taught me to keep trying for something until the day I die. Even if right now will seem downright luxurious compared to what is to come.

But what do I have now that is so special to me? I have a steady (if meager) income without having to destroy my body trying to work. I have subsidized housing, so I can (mostly) afford bills and food. I have housing at all. I have wheelchair accessible housing… mostly anyway. I have Medicaid and Medicare for health insurance. My GP is excellent and most of my other doctors are good. People actually pay attention to how to detect and treat pain, infection, and other medical stuff despite my communication problems.

I have a means of communicating in words that isn’t speech. I have learned how to communicate in words rather than just imitate what I thought was expected. I have a wonderful cat. I have friends who know me as myself, not a mirage, and who are not bullies in disguise. Including friends where we can understand each other without having to try too hard. Including some who can do so without words. I have learned some degree of self-respect and basic ethical awareness when dealing with people. I have a meaningful spiritual life. I have Internet access. And I’m alive.

So I have the basics — and more — and that is more than I ever expected. There’s things that would be better if they were different. But I can live this way fine. And I just wonder what kind of life a person has to have led to act like what I have is worthless.

The thing about never seeing yourself reflected by the people around you is that it’s simultaneously traumatic and invisible. So you feel terrible but you can’t put a finger on why. So unless you have someone telling you what’s going on, you’re eventually going to turn it around on yourself and become really miserable. And then your society generally sees your feelings as the problem, which just puts another layer of the same thing. It gets really convoluted. Because the answer — actually acknowledging you exist — is apparently too simple for some people.

This is why I freak out so badly sometimes when i realize I’m talking to someone who’s force-fitting me or what I’m saying into categories in their head that make no sense. It’s not the one instance. It’s the lifetime of little instances built up over the decades. It’s the fear — complete, unreasoning terror — of things ever going back to how they used to be.

I can’t imagine what it must feel like to grow up in a world where people see you. And talk to you. And about you. And not just about a series of illusions and mirages in their heads. I’m not talking about going out of their way to be inviting, even. Just noticing would be enough. Because when people notice, they act on what they’ve noticed, and it just unfolds naturally.

And if you ever wonder why I am so attached to redwood forests, it’s that. Both the one I was born in and the one I first lived on my own in. In both instances there was an intense sense of exactly where I belonged in the world. Everything around me told me that. And if I want to remember, all I have to do is think about that environment. Trees, soil, rocks, slugs, fungus, owls, moss, lichens, everything. I’m not able to live there but that doesn’t prevent me from being aware of these places. And whether it’s because I was born in such a place, or some other reason, that gives me the most intense feeling of belonging in the world that I’ve ever known.

Love, Fear, Death, and Disability

People fear and even hate disabled people because we remind them that they are both fragile and mortal. They don’t want to remember those things about themselves. And they find ways to physically shut us away, and mentally shut us out of their awareness. And they delude themselves that they are different. That something they do will prevent them from ever becoming one of us. And prevent them from ever dying.

I have lived a long time as what I’d call precariously ill. A person who’s precariously ill isn’t terminally ill. There’s no saying for sure that we’ll die of our illness. But death is a constant possibility.

In my case, my gastroparesis led me to frequently inhale large amounts of stomach fluid at once. I have bronchiectasis, which makes it easy to get infections and hard to clear them. And untreated, severe adrenal insufficiency, which can turn an ordinary infection into an adrenal crisis. That combination made my health, and my life, very precarious indeed.

I have a strong belief that if people were more open about death, people would be less terrified of their own mortality. And thus less terrified of things that remind them of their mortality. Like, say, disabled people and sick people.

I’ve never had what they call a “Near Death Experience” ™ where you come very close to death and have this fairly uniform experience of a light at the end of a tunnel and all that kind of thing. But I’ve had encounters where I’ve gotten too close to death for comfort. Usually I had an infection that wasn’t playing well with my untreated adrenal problems. I would become extremely weak, so tired that it felt like just keeping my heart running and my basic bodily functions going, was too much. and I was losing the ability to do those background things your body is supposed to do effortlessly. And then I’d see death hanging around, it’s the only way I know how to put it. Sometimes other people around me would see it too.

A light would fill the room. It wasn’t a visible light. It was something I’d see on the inside of my head. It seemed to be coming from everywhere. There was a sense of being more profoundly at home than I had ever been in my life. As if there was this one tiny piece of the universe where I fundamentally belonged, and I had finally found it. There was an overwhelming sense of benevolence and peace.

And there was the sense that if I wanted to, all I had to do was relax and stop fighting. All I had to do was rest. And I could be in that intense, profound place of love forever. But if I fought, and won, it would still be waiting for me when my time had come. It did not entirely urge me either way. It was patient. It had all the time in the world.

But while it didn’t actively urge me to die, death did have a gravitational field. That’s what I called it during my first conscious encounter with it. I was ashamed, at first, to tell my friends what it had felt like. I was afraid they’d think I was weak, or cowardly, or that I had a death wish. So with some disquiet, I told my friend what it had felt like the first time I encountered death in this manner.

It felt, at first, like I couldn’t fight. More than that, I didn’t want to. I couldn’t even conceive of fighting. I had a strong urge just to rest. To allow my heart to stop and my breathing to slow and to surrender myself completely to death. The closer I was to death, the stronger this feeling was. So I started referring to it as a gravitational pull. It was only when I gained a lot of strength back due to medical treatment that I even had the will to resist, let alone the power.

My friend gave me an explanation that made me feel much better about my reactions. It was not that I was weak-willed or wanted to die. It was entropy at work.

Entropy involves a system trying to go to the lowest energy state. In order to survive, living things are constantly fighting entropy. We do this by feeding off of other living things and converting it into fuel to give us the continued energy to survive. If we simply allowed ourselves to go to the lowest energy state without a fight, we’d be dropping dead right and left. Most of the time, we are good enough at temporarily cheating entropy that we don’t feel its pull on us.

But when we are severely ill enough that death is a possibility, then we begin to feel it. We feel how strenuous it is to stay alive. And if we are sick enough, and exhausted enough, we begin to feel an overwhelming desire to allow ourselves to go to that ultimate rest. To allow our bodies to wind down forever. And that is the gravitational pull we have to escape if we are to live.

Much like a black hole has a point of no return, death has an event horizon too. I’ve obviously never been past it. But I’ve seen people and animals who have. And I saw (in my head, not with my eyes) that same intense light around them, that seemed to come from everywhere and nowhere at once. I felt that same profound, unconditional love.

This is how I know that death is nothing to be feared. In fact, even though the separation between us and our loved ones can cause tremendous pain and grief, death itself can be a beautiful process for the person who is dying. It can be for those around them, too, if everyone lets it be what it is.

I want to emphasize something though. Yes, I believe that death can be benevolent, friendly, necessary, and even beautiful. But I also believe all those things about life. And given that we only get one shot at this lifetime (even if reincarnation exists, which I don’t pretend to know) then it’s very important to resist death until it’s actually our time to die.

Our life is something we owe not only ourselves, but the people and society around us. Whether or not we understand our contributions, we each have one, and the world loses something without each of us in it. Disabled people in particular get a lot of messages saying that we are burdens on society, that we do not contribute, and that it’s best if we’re dead. And that’s completely wrong. In fact it’s despicable, unforgivable, to do anything to convince someone that these things are true of them.

So I am not saying “Death is beautiful, surrender to it the first chance you get.”

I am saying “Life is beautiful and you are an important part of the world, whether you can see it or not. You have obligations to the living world, to stay here as long as you possibly can. But when your time truly comes, don’t be afraid. Death is a necessary part of life. And it can be friendly, benevolent, and beautiful in its own right. When your time comes, it’s possible to die with love, without fear.  And if you have ever existed, then some place in time, you always exist.”

One thing that facing death can do, is force you to reexamine your priorities in life. And that can be scary. It can be especially scary if there’s something in your life that you’ve been running from, hard, for a long time. As you near death, you won’t be able to keep up the fences in your mind that allow you to deny things like that. If you learn to face these things long before you get close to death, then death is less scary. And if there’s something you’ve done wrong that’s been a burden on your mind, it can be important to remove that burden before you die. That’s why some religions practice confession before death, but it doesn’t have to be in a religious context if you’re not religious. But the sooner you deal with things like this, the less they’ll hang around and make your death unpleasant.

But the biggest thing I have found, any time I’ve even faced the possibility of death. Even if I haven’t come close enough to feel that gravitational pull. Is that it’s forced me to examine what is really important in life, and what is trivial. And it’s actually pretty simple:

Love is all that’s important. The experience of love, the expression of love, living love and compassion as your highest and only principles in life. Living for what you can do for others, not what you can do for yourself alone. Everything else fades into the background.

I can remember an ambulance ride after aspirating stomach fluid. When that happens, you don’t know how long you’ll survive. You could get an infection and get over it, or it could do you in within a week. You don’t know if you’ll get lucky, at that point. And everything narrows down.

At that point, I always find myself faced with one question: “Have I loved enough, and have I expressed that love enough throughout my life?” Everything else falls away. That’s the only thing my conscience cares about in the end. Have you lived your life as a strong enough expression of compassion and love? The best way to have few regrets when you die is to get started living that love right now. Easier said than done, but worth the struggle.

This doesn’t mean becoming touchy feely and hugging everyone you meet. It doesn’t mean being serene and peaceful all the time, or never getting mad. (In fact anger is sometimes — sometimes — an expression of love at a particular moment. Not habitual anger problems, but anger as a reaction in a particular situation when everything fits together in a way that requires it.) Love is an active thing that requires constant evaluation and action. It’s not holding hands and singing kumbaya. It’s not feeling soft and fuzzy all the time. Expressing real love can be fierce and intense, difficult and demanding, even scary sometimes.

But if you want to have as few regrets as possible at the time of your death, it’s best not to wait: Get started living a loving life right now. And start facing things you’re trying to run from. And unburden your conscience from anything that’s been weighing on it. Because you don’t want to die terrified, fighting against yourself, feeling the pressure of unrelenting guilt or shame. It’s best to live your life now in a way that will leave you with no regrets when you die.

But that’s a hard thing to do. I’m aware of this stuff, but I can’t claim to be living the perfectly loving life that I want to be living. I know there are things I could be doing for others, right now, that I desperately want to do for others, that somehow never get done. Despite that, I know deep down in my bones that love is the only way to live a good life or die a good death.

It’s hard for even disabled people to talk about what a good death looks like, because we are under so much pressure from society to accept that death is better than disability, that death is an acceptable alternative to the unbearable suffering that we are supposedly enduring, that we will be happier dead than alive. The media is full of stories where nondisabled people kill us and we’re said to be better off, our deaths are said to be understandable. And stories where we become suicidal and instead of trying to prevent our suicides, our societies rally behind us to give us a ‘right’ to an easy death. That stuff is everywhere, and it makes it very hard for us to look at what a good death would actually be.

It’s especially hard to talk about accepting death, because people are always pressuring us to accept our deaths long before we are ready to die. I would quite possibly be dead already if I hadn’t had a lot of the online disability community fighting for me last year, when doctors tried to persuade me not to get a feeding tube. (They couldn’t deny it outright, because they knew I needed one. So they came into my hospital room every day while I was sick and weak and exhausted from pneumonia, and tried to persuade me that life with a feeding tube was so awful that ‘the alternative’ would be preferable.) I clearly disagreed with their assessment of when is the right time to die, and I disagree with anyone who tries to make it sound as if living with a feeding tube, on a ventilator, or with other ‘artificial’ means of living, is somehow the point at which disabled people should give up and die.

But there is a point when giving in isn’t a bad thing. And it’s not a matter of how many machines you’re on to keep you alive. It’s not a thing that can be quantified. It’s that nebulous time “when your time has really come”. At that point, there’s no shame in giving up the fight, because fighting when you’re truly beyond death’s event horizon just makes death more unpleasant, it doesn’t keep you alive. But I’m afraid to even say this, because I know someone, somewhere, will twist it around and use it to persuade disabled people to give up and die before our time is really up. It happens all the time, and disabled people have every right to be extremely wary of talk of ‘giving in’ as a good thing.

But regardless of that, death still has an event horizon. And once you know, for sure, that you’re beyond that point of no return, then there is nothing wrong with simply surrendering to love, surrendering to the light, surrendering to whatever gods you do or don’t worship, whatever you want to call it, however you see it. And you will become part of the rest of the world, and that is right, and true, and beautiful. And heartbreaking for those you leave behind.

Between my experiences lately, and serious medical experiences my parents have been having, I’ve been thinking a lot about death.

Normally, I write about the ableism involved in pushing disabled people towards our deaths. The ableism in thinking that disabled is just half-dead and that dying is good if you’re disabled. The ableism in thinking things like “They keep people alive too long these days, it’d be better if people just died without a long drawn-out time where they’re disabled before they die.”

But now, I’m writing about a different aspect of ableism and death: The way ableism against disabled people is tied to nondisabled people’s fear of sickness and death and physical imperfection, fear of their own mortality. And dismantling fear of death dismantles that aspect of ableism. Nothing I say here should be taken as supporting ableist ideas about how disabled people should just accept our deaths and go quietly. Instead, I’m talking about a more universal acceptance of death, one that should happen when our time has truly come and not before.

And I’m talking about love, because I deeply believe, more deeply than ever, that love is the only thing that can make things right in the world. Love that comes from the depths of what it is to be a person, love that comes from everything good in the world, love that demands a lot of us and changes us and is intense and powerful and fierce and real and sometimes demanding and scary. Love that leads to compassion that leads to actions people undertake for each other, not for ourselves.

And most of my sense of this love comes from my encounters with death. I don’t know why it works like that, but it does. I’ve talked to others who have had similar experiences. Sometimes facing your own mortality can make you scared and twisted up and angry and bitter. But sometimes it can open you up to new depths of love and caring about others, that you didn’t know were possible. And even if you start out scared or angry or bitter, it’s possible to change bit by bit, more and more towards enacting that love in the real world.

I firmly believe that if people were more willing to face our collective fragility, vulnerability, mortality, and death, then we would be less ableist. All of us, disabled and nondisabled.

I’m going to end with a video taken shortly before the death of Eva Markvoort, a young woman who had cystic fibrosis, got a lung transplant, and ultimately died of chronic rejection. I’m posting the video because she so clearly allowed her impending death to open her up to all of the love that the world has to offer. This wasn’t easy for her, it didn’t just magically happen, and it’s not meant to be an inspirational cripple story, which I’m sure she’d have hated — one of those things where we exist only to teach a lesson to the nondisabled world, when we are so much more than a lesson. Yet I hope that we can all face our deaths as well as she did in the end. At least, I hope that I can. When I look at her in this video, I see in my head that invisible solid light that I see whenever I or someone else is sufficiently close to death — it’s all around her, it’s coming through her, and it’s allowing amazing, beautiful things to happen to her and those around her in her last hours.

This was her farewell video to the world, don’t watch it without something to wipe your eyes:

 

She once wrote a love letter that read, in part:

When I sit outside on the ferry is when I most believe in love. I don’t know why. Something about the wind makes me feel alive…the seagulls and the sky…whether its sunny and bright or cloudy and grey or nighttime and I’m surrounded by vast darkness…I just feel…FULL. Full of love and energy….almost as though I’m porous and the wind soars through tiny holes in my body and I’m part of it all…the earth and the people and the relation of everything with everything…as though I don’t matter…but its not scary…its wonderful….i feel so free.

It’s the only time I’m not afraid to die. Cuz I can feel the wind and I know that I’ll always be a part of life…and the love and energy that are contained in my skin will be let loose into the wind and the world will just know how much I care and love and I will live forever. I believe that love is what defines us as human. I believe that my love for you will never die. My heart breaks to think of how lucky I am. How happy and hopeful and full I am. I love you so solidly. I am real and you are real and I hope we will always be real. I am in awe of you. My interest in who you are is infinite. Drop a stone in the well of my desire for you and you’ll never hear it hit the bottom. You amaze me. Your love makes me invincible…no not invincible…immortal. Because when I die I believe my love for you will surround you till your soul joins mine in the wind.

I hope that the world can learn to overcome the terror they associate with fragility, imperfection, vulnerability, and mortality, the terror that currently makes so many people fear and hate disabled people (and, in turn, drive us closer to an untimely death).

I hope that the world can stop fearing death, and stop fearing the disability and sickness that reminds them of death.

I hope that people will understand my meaning here, and not use it to justify the deaths of disabled and chronically ill people who need all the help we can get to survive already.

I hope that the world can learn to love — in the active, difficult, demanding way that deep love entails — and that this can further all of the above. Because active love and compassion, caring about each other on every level possible, is the only thing that digs deep enough to create lasting change.  And love is the only thing that can end fear or hatred.

When we died, we found each other.

I was there
I was there and I felt
Your hands around my neck
Hands on my chest pushing me underwater
Tying me into the car and starting the gas
The hot poker
The bullet
The knife
I was there and I felt
Where is the air
Why isn’t my body working
Why can’t I get air
That overwhelming hunger for air
And then…
And then…

But I was there and I felt

The one person I was supposed to trust more than anyone in the world
And she abandoned me and spat my love back in my face

And I was there and I felt

The one person I never trusted
Even though everyone else said she was a saint

And she was a saint because of me
She was a saint for putting up with me
She was a saint…

…because the only person who would spend any time around me
the only kind of person who would ever want to
the only kind of person who could care for a person as
broken
difficult
damaged
destroyed
nonexistent
unfeeling
uncaring
noncommunicative
as me
would be a saint
wouldn’t they?

And since only a saint would take care of me
Then it could only be expected
It could only be expected
That a normal person
Could never handle
The burden
Of a person like me
(and therefore)
That it’s understandable
It’s understandable if
If someone would
Just want
Me to die.

My suffering was over, they said at my funeral
(When I even got a funeral, which was not always)
My mother was sentenced to
Five years
Fourteen years
Twenty years
Of living with me
(Even when she didn’t live with me at all)
She did not need any further prison sentence
For my murder

When I died, I stopped being separate
When I died, we found each other
We found each other
All the murdered disabled children
Cast out of life by those we should have been able to trust
And we held each other
And we became each other
Now we speak with one voice

Understand this first and foremost
No matter what you have heard about us
We loved
We could love
That we could love means
That we felt what you did
We felt it then
We feel it now
We know what evil means
Because we know love

Now understand this:

We were there
We saw
We knew
We understood what you never thought we could

And now we look you in the eye
And in the name of love
In the name of everything holy
In the name of the union we have found
(Which is nothing, nothing, nothing less than the deep universal love that They said we could never feel)

We say
Not
Ever
Again