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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Deliberately stressing me out is, at this point, assault.

That’s how I see it anyway.  I don’t mean disagreeing with me.  Anyone who wants to disagree with me can disagree with me as much as they want to.  I’m talking about personal attacks, and you people know who you are by now.

I have severe adrenal insufficiency.  For those who don’t know what that means, it means that my body is not making cortisol.  I have to replace all of my cortisol with a steroid called dexamethasone, and I will be on dexamethasone for the rest of my life.

Cortisol is one of the hormones that is called a stress hormone, meaning it gets used when you are under physical or emotional stress.  This means that people with adrenal insufficiency have to be extremely careful when our bodies or emotions are under extra stress.

For instance, I recently had aspiration pneumonia requiring antibiotics.  This means I had to triple my dose of dexamethasone to avoid what’s called an adrenal crisis (click through to Wikipedia if you want the details).  Adrenal crisis is how people with adrenal insufficiency tend to die.

It’s not just physical stress that can cause an adrenal crisis, however.  It’s also emotional stress.  Wikipedia’s commentary on prevention of adrenal crisis is, I quote:

Adrenal crisis is triggered by stress and hence people with adrenal insufficiency need to avoid stressful situations.

That’s very important for managing adrenal insufficiency.

I recently found out that my father is dying of cancer.  We don’t know how long he has.  It has metastasized into several organs to the point where they haven’t been able to trace it back to wherever it originated.

My mother, his only caretaker, has a more severe form of a neuromuscular junction disorder (probably myasthenia gravis) that I also have.  She has to not only take care of him, but do all the jobs around the house that he used to do.  Before all this started, she had a myasthenia crisis and almost died in the ICU when she stopped breathing earlier this year.  Doctors have warned her that she’s not able to handle this and that she needs to move closer to a hospital.

My parents recently had to temporarily evacuate their home due to a forest fire that went right past it.

My grandmother has been slowing down and in poor health, but in a vague enough way they don’t really know what’s going on.  She says she’s willing to take antibiotics, but draws the line at invasive treatments like surgery, if they figure out what’s going on.  She says she’s led a good long life and she’s at peace with death.

I am under more stress right now than I have ever been in my life.  I have to consistently take a higher dose of dexamethasone than normal, just to be able to minimally function.  My endocrinologist says I’m doing the exact right thing.  But taking the extra dexamethasone doesn’t magically make the stress or its effects and dangers disappear, it just makes you safer.

I reserve the right to delete whatever posts I want for whatever reasons I want.

I reserve the right not to explain to you why I’m deleting your posts.

I reserve the right not to owe any of you an explanation for anything I do on this blog, or in my life in general.

And if you come here deliberately trying to antagonize me — and you know who you are, because you’ve been doing it for years — I will treat it the same as if you walked up and tried to start a fistfight.  Because right now, more than ever, any stress can have a catastrophic effect on my health.  Adrenal insufficiency is the worst disease to combine with stress, and myasthenia gravis doesn’t help either, especially now that I’m going on Cellcept (an immune-suppressing drug).  And don’t try to tell me these diseases aren’t real, my doctors who in both cases did the labwork personally, will laugh in your face. And to be abundantly clear it’s adrenal insufficiency (i.e. they could not find cortisol in my blood at all), not adrenal fatigue (i.e. a condition used by quacks to blame literally any symptom on, regardless of your actual hormone levels, which then puts you in danger because you’re not getting treatment for whatever the real disease is).

So if you disagree with me, disagree with me.

But if you’re here to antagonize, to bully, to start fights, with a chip on your shoulder, to threaten me, to accuse me of not really being disabled, to deliberately trigger my PTSD, and all the other things that stalkers and trolls like to do for fun?  Fuck off back where you came from and never bother me again.  And understand that if I actually enter an adrenal crisis because of stress you caused, then you are partially responsible for what happened.  I guarantee you the adrenal insufficiency is 100% the real deal, no matter what you think.  And people who know me will view you as responsible.  If you have enough of a conscience to care about things like that, then think about it before you pick fights with me for fun.  I have enough going on right now without that.  Have some basic human decency for once.

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?

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.

Fat people and feeding tubes.

This isn’t a post I like to write.  The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat.  Except they usually go beyond calling me fat.  They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse.  In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have.  It’s clear that most of the time, these people are not actually interested in hearing my answers to their questions.  They are here to take pot shots at my weight, and to imply that I’m not really sick.

But the thing is, even people who are not bullies have questions like this in their minds sometimes.  And many people who are fat themselves, can be slow in recognizing that they have a disease.  And so can the doctors of fat people, who have all the same assumptions about fat and weight loss that the rest of the world has.  So understand when I’m writing this… the bullies didn’t goad me into writing it.  I’m writing it because it’s an important topic to understand when it comes to healthcare for fat people.

And because fat people die every single day due to inadequate healthcare:

• When we get sick it’s recognized less often.
• We’re more likely to be told to go home and lose weight and forget about whatever symptoms brought us in.
• If our disease causes unexplained weight loss, that will initially be seen as a good thing, even if the disease turns out to be cancer.  (Unexplained weight loss is always a serious medical symptom that needs checking out, no matter how much you weigh to begin with.)
• If our disease causes weight gain, then we won’t be taken seriously either, we’ll just be blamed for the weight gain.  (This happens all the time with Type 2 Diabetes, which sometimes causes weight gain rather than just being caused by it.)
• Due to bad experiences with doctors, many fat people won’t seek healthcare even if we are dying.

These are very serious problems, and any Internet bully who adds to these problems is contributing to a lot of suffering and death for fat people and our loved ones.  To the ones who bug me relentlessly — see how funny it seems when it’s your mother with the same diseases I have, and she dies before she can get adequate healthcare because her doctors aren’t as on-the-ball as mine were.

So here’s the thing:  I have gastroparesis.  That’s a partially paralyzed stomach.  It’s one of a number of conditions classified as motility disorders, which are disorders in the ability of your body to move food efficiently down your digestive system.  It’s not diagnosed by weight, it’s diagnosed by a test where you swallow radioactive eggs and they see how long it stays in your stomach.  Mine stayed in my stomach too long, therefore I have gastroparesis.  End of story, there’s no arguing with that.

Symptoms of gastroparesis are a weird thing.  With many diseases, the degree of symptoms is roughly the same as the degree of how severe the actual cause is.  Gastroparesis is different.  You can have severe symptoms with fairly mild slowing of the stomach.  You can have very mild symptoms in a stomach that’s almost stopped altogether.  Nobody knows why this is.

Symptoms of gastroparesis include nausea, vomiting, reflux, bloating, vomiting up undigested food from three days ago, loss of appetite, loss of desire to eat even if you technically have an appetite (you feel starving but can’t make yourself eat),  feeling full too easily, weight loss, blood sugar problems, and occasionally weight gain.  (More on that later.)

I have had most of the symptoms of gastroparesis for a very long time, and I also have symptoms of motility problems in my esophagus going back longer.  When things really came to a head for me, I had stopped being able to keep down any food except broth and occasional, tiny servings of grits.  Then I got aspiration pneumonia from the associated reflux.  Then I landed in the hospital and launched into what we now know was skating on the edge of an adrenal crisis, but back then we had no idea.

Being fat delayed my treatment.

People have this bizarre view that if a person loses weight, they just go from fat to skinny.  They also have this bizarre view that it takes eating a lot to stay fat, and that anyone who isn’t eating a lot instantly goes from fat to skinny.  So when I told them “I’ve been eating nothing but broth and grits for weeks, and my weight is dropping” they didn’t believe me.  They didn’t believe me, in fact, until I had been in the hospital under constant supervision, eating absolutely nothing, and the weight continued to drop off faster and faster.  Finally they got a weight on me, and freaked out at how low it was compared to my last weight in the doctor’s office.  They said that I was burning muscle and that you can die of that, especially if it starts affecting your heart.  It didn’t matter that at this point I was 200 pounds (I’d been 245 to begin with), which is still technically fat.  Everything the doctors told me, said that rapid weight loss from failure to be able to eat can kill you before you even become thin.  But it took seeing me failing to eat every day before that knowledge could break through their own biases.

So they embarked on a program to bring my weight up.  Yes, I said bring my weight up.  Because if you go from not eating, to eating a sensible amount of food, then that is what is going to happen, no matter what your weight is at the moment.  The fact that I weighed 200 pounds did not give me the magic ability to start eating a normal amount of food and keep losing weight.  That’s not how human physiology works.

They put me on every nausea medication they possibly could.  I ended up on a cocktail of Reglan, Zofran, Phenergan, Ativan, Benadryl, and Marinol.  Prior to the Marinol, even that combination wasn’t quite enough, and they were seriously considering putting in a feeding tube.  They had, at this point, done their preliminary diagnosis of gastroparesis, and they were sure a feeding tube was in my future.  But they were able to send me home on a diet of Ensure Plus and lots of nausea meds.  It worked for a few months.

But my gastroparesis symptoms only got worse.  They were getting worse in two areas.  One, I was refluxing stomach fluid into my lungs and getting aspiration pneumonia a lot.  The aspirations were happening several times a week, and I think I got pneumonia something like 7 times that year.  With bronchiectasis to make things even worse, the pneumonia was going to kill me.  Secondly, I was losing weight again.  I had brought my weight up to 223 pounds at my best, but then it went down to 193 at a point when I could only keep down one Ensure a day.  It went down that fast within a couple of weeks.

So they agreed I needed a feeding tube if I were to survive.  They didn’t agree that I should want to survive, but that’s another story I’ve told before.  They did agree that I needed a feeding tube in order to survive.  And eventually I got that feeding tube.

The thing about feeding tubes, for any skeptics out there?  Is that they don’t give them out to people who don’t need them.  Yes, everyone has heard of rich women who diet by using nasogastric tubes.  But this isn’t a nasogastric tube, it’s a GJ tube.  And I’m not rich, I’m on disabled adult child benefits, Medicare. and Medicaid.  Literally the only way to get a feeding tube on Medicare and Medicaid, is to desperately need one.  Literally the only way to get this particular hospital to place a feeding tube of this nature, is to desperately need one.  Anyone who can see that I have a feeding tube and still questions whether I need one, all I can say is they have no business advising anyone on the practice of medicine because that ain’t how it works.

The above feeding tube?  Only way to get it is because it’s medically necessary.

So why is a feeding tube medically necessary in a fat person?

Because feeding tubes are given for a very wide range of problems.  In my case, there’s two big problems that are simultaneously solved, or at least made much better, by the same feeding tube.

1.  I can’t eat sufficient food to maintain my weight, or even to drop weight slowly enough to be healthy.  My stomach doesn’t work, so I have to bypass it by putting food directly into my intestines.

2.  I aspirate stomach fluid, which can be drained out of one half of my feeding tube.  Continued aspirations would result in repeated infections until eventual death.

It’s the first one people don’t seem to grasp.

I’ll make it very simple:  You can die from complications of rapid weight loss, before you ever become thin.  You can put a strain on your heart, you can dehydrate, there are a million ways to die from malnutrition or dehydration before you become thin.  And it’s not best medical practice to sit around watching a person waste away, waiting until they become below a certain weight before you become concerned that they’re doing things like burning heart muscle.

Even if you manage to become thin without dying, your body is wrecked at that point, and it’s going to be harder to heal you and keep you alive than if the tube feedings started while you were still fat.  My body had a lot of problems and I never even made it to thin.

I’ve consulted with nutritionists on the matter, and they’ve repeatedly told me that my goal should not be weight loss.  My goal should not be weight gain either.  My goal should be to stabilize at whatever weight my body seems to want to stabilize at, and then stay there.  Any rapid, unintended weight gain or weight loss is a problem that needs to be dealt with by adjusting the way my tube feedings are done.

For what it’s worth, right now I weigh 178 pounds.  That is 67 pounds lighter than I weighed when all of this started.  Most people would call losing 67 pounds without intending to, to be symptom of a major medical problem.  That is how every medical professional in my life has treated the matter.

The only people who goad me about how fat I supposedly am (and they always add at least 100-200 pounds to their estimate of my weight) are people online who only see me in pictures.  Offline, people are constantly asking me about having lost weight.  It’s not subtle.  It’s not even close to subtle.  My clothes hang off of me.  My pants and skirts fall down if I don’t use belts or suspenders.  My entire facial shape has changed.  Everyone who hasn’t seen me in awhile tells me I look like I’ve lost weight.  Medical professionals express extreme worry about the amount of weight I’ve lost.  I’ve had random nurses come up to me in the emergency room and say “Oh my god, are you okay, it’s the gastroparesis and malabsorption making you lose all that weight, isn’t it?” and things of the like.

Only on the Internet can you lose 70 pounds so rapidly that it scares your doctors, and then be told how fat you are for not instantly losing 70 more.

I may gain some of this weight back now that I’m on steroids for the adrenal insufficiency, which is another condition that can cause weight loss.

But back to weight and gastroparesis.

Not only is it not true that only thin people get gastroparesis.  Not only is it not true that very fat minus a lot of weight can still equal fat, if you were fat enough to start with.  But gastroparesis can actually cause weight gain.

It works like this:

Gastroparesis causes the amount of calories that you get, to be restricted.

Your body at first loses weight.

Then your body goes into starvation mode.  It notices that there are fewer calories.  So it begins trying to hang onto every single calorie for dear life.

At which point your body gains weight again.

That’s common for a lot of diseases that cause restriction in calories, and can be especially common in diseases where the symptoms vary day to day, so the amount that you can eat varies as well.

So “How can you have gastroparesis?  You’re fat!”  Doesn’t work on so many levels.

But this kind of thinking kills fat people who have diseases like this one.  It kills fat people who have anorexia, who can’t get treatment because their body weight isn’t low enough.  It kills fat people in general.  The idea that you can’t remain fat while having a disease that affects eating in some way, is extremely common and extremely deadly to any fat person who ends up with such a disease.  And the idea that we only deserve treatment if we’ve become so starved that we are skinny (at which point it may be too late to save us), kills us as well.  Every.  Single.  Day.

I find it ridiculous when people talk to me about how much I’m supposedly eating, anyway.  The only food I take in is a nutritional supplement called Osmolite.  It’s pre-mixed to be a certain number of calories a day.  I take even fewer calories a day than are in that mixture, because I don’t feel like I need the full 1500.  There is no other source of food for me.  Any food I don’t eat by the end of the day is poured down the drain.  Literally everything comes through the feeding tube.  So don’t give me shit about ‘overeating’, you clearly don’t know what you’re talking about.  For whatever reason, my body wants to be about 180 pounds, and has done ever since I had a period of starvation in my early twenties.  And it’s honestly none of your business.

So if you ever hear someone running around talking about any fat person in terms of, “She can’t really have a condition affecting food intake, or she wouldn’t be fat,” then point them at this post.   If you ever hear anyone saying that only thin people need feeding tubes, point them at this post.

Because the need for a feeding tube comes most often when someone can’t eat.  When a fat person can’t eat, that is as dangerous as when a thin person can’t eat.  You don’t wait for all the weight to drop off before you decide that this whole not eating thing is a medical emergency.  And this is why plenty of fat people have feeding tubes.

We may have feeding tubes because we can’t swallow.  We may have feeding tubes because we choke on our food.  We may have feeding tubes to bypass a stomach that doesn’t work.  We may have feeding tubes to drain stomach fluids that would otherwise fill up our lungs and kill us.  We may have feeding tubes because our esophagus doesn’t work.  We may have feeding tubes for every reason that anyone else needs a feeding tube, and none of those things are changed by the fact that a person is fat.  All of these things are just as serious problems in a fat person as in a thin person.

I honestly think that some of the nonsense I hear about fat people and feeding tubes is because in the online world, feeding tubes have become a symbol of anorexia, a condition that is (erroneously) associated in most people’s minds with only super-thin people.  Feeding tubes are what happens when someone with anorexia can’t eat enough on their own to maintain an even vaguely healthy weight.  You see pictures of people with feeding tubes all over anorexia websites, and chances are that if you see pictures of people with feeding tubes, you’re seeing pictures of extremely thin people.

But being severely underweight (for whatever reason) is only one among dozens of reasons a person might need a feeding tube.  And most of those dozens of reasons do not have a weight limit.  So please don’t bully and harass fat people for having feeding tubes.  And if you see someone you know doing the bullying and harassing, set the record straight.  Honestly, the fact that I have a feeding tube at all shows I need one, because they don’t implant GJ tubes without a damn good reason.  And the same is true for anyone else with a G tube, J tube, or GJ tube.  These are serious surgical procedures that are never undertaken lightly.

As for the bullies, I hope I never have to live in a world where they run my medical care.  I can just see them “You lost 70 pounds rapidly without trying?  Come back when you’ve lost 70 more and maybe then we’ll help you, if you don’t die first!”  It’s ludicrous.  And deadly.  All of these attitudes contribute to the deaths of fat people with genuine health problems.  And that’s why, instead of blowing it off like usual, I decided to make an entire post on the topic of fat, feeding tubes, and gastroparesis.

A warning: I won’t be accepting comments that are nasty towards fat people or that support the idea that our health problems aren’t as serious.  Nor am I going to be accepting comments to the effect of “go on a diet, it will solve everything”.  Nor will I accept comments from bullies.  This is about discrimination against fat people both in the healthcare industry and in broader society, and this is all this is about.  Anything else will be deleted.  Even when it comes under a cloak of “But I’m only so concernnnned about your healllllllth…”  This isn’t the time or the place for that crap, please respect that.  This is a post about why these bullies’ attitudes are potentially deadly to fat people, and I won’t have it pulled off course into a million unrelated debates.

P.S. Bullying fat people about medical stuff like this, and deliberately spreading misinformation about the medical needs of fat people, kills fat people.  Every one of you who targets me in this way has to know that in your heart.  Have that on your conscience, if you have enough of one to bleed through all your cruelty.  When it’s your turn to face yourself for who you are, you’ll have to answer for things like that.  I hope you can manage.

 

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.

Mud and wood-sorrel.

Who did you hold when you fell to the floor?  And will you ever tell me more? Your cast iron hands and your filigree mind have never had much time for my kind. I can rise from the floor and take my leave of here, anytime I want. Just remember, anytime I want.

Tell me of earth, you who have never touched it, but only held it in your mind, an abstract component in one of your filigree spells. And I’ll tell you of words, I who have seldom seen them but as the birds that Donna spoke of, falling without a sound. And maybe somewhere we can touch and find our common symmetry. Or maybe only common disdain. So common, that disdain.

I held out to you a hand full of soil drenched in water. It had the smell of roots, of fallen needles, the beginning of green wood-sorrel. You shouted, drop it, get out, get it out of here!  Get my damn mud out of here before it ruins your floor, your house, your clothes, your furniture.

I fell down on the floor to examine the soil. I ran it over my fingers and inhaled the rooty scent.  And I could find nothing amiss. Nothing of this mud you spoke of with such disdain.

You were never aware of the power of the words you threw behind you, one scrap, one song, one to sting. Mud, you called it, and suddenly it became filth, and I became filth by association. You never saw a beautiful or useful building constructed of mud, I imagine, nor all the other uses of mud… or the very tone of your voice that tells us all “Mud is beneath me, beneath me, beneath me, Mud is beneath me” would simply not be.

But people heard your words carried on the wind. They do that. Your words ride the wind whether you will them or not. And people hear them, and people change.  Your words carried down to someone whose house was made from mud, and when she heard the tone in your voice when you said mud, for the first time she was ashamed.  Half ashamed, half defiant, but all unnecessary if you’d kept your disgust to yourself.

My voice is the color of mud, and my skin is the texture of bark. My love has the depth of water, my touch is as soft as mist dancing past trees in the dark.

But right now I feel bone dry, as if my roots can’t push the water far enough into the sky.  And there’s haze between me and you.  My eyes are like a desert, my kidneys burn in the night while I’m waiting, waiting to put things right.

Can you enter my life without burning me from the inside? Can you steer your way round the curves of my body without looking for all the ways to tell me they’re wrong to exist. Can you?

Or will you just shout at me that I am mud?  And with your words, turn that into an insult rather than a thing of beauty?

I want to curl up underneath the mud and show you I can turn into wood-sorrel.  Show you that nothing can uproot me, least of all words.  And hold my roots in the ground and turn my leaves to the sky and taste how sweet light is and be cradled in the muddy dark.

(Originally written Oct. 12, 2013)

My worst social trait.

One of the things I feel the most guilty about is my inability to stay connected with people I care about.

Generally, I can actively have between 1 and 3 friends, at most, at a time.  I may have other friends who are my friends, but I don’t communicate with them.  I don’t even remember, half the time, that they exist.  It’s gotten so bad sometimes that I live right down the hall from one of my closest friends in the world and I have sometimes forgotten that she exists for over a month at a time.

People who are not tied to me closely in a way where I have to communicate with them regularly, don’t stand a chance unless they are able to keep up the lines of communication, themselves.

I try as hard as I can to change this.  I feel horrible about people that I feel like I’ve picked up and then abandoned, so many times over the years.  And then, to make things worse, it can get to a situation where I only contact them when I absolutely need something out of them.  So then it becomes “I can’t even contact you most of the time when I just want to talk to you, but I can contact you when I need something from you.”  That feels horrible.  I know that it’s not the case that I’m just “using” them, I know this is all tied into autism and executive dysfunction and movement disorders and memory problems and inertia and a million other things, but it still feels like this is what’s going on, and I can’t help wondering if they secretly resent me for it.

Sometimes, to make matters worse, there are people I think about all the time, but I can’t write to them.  I get writer’s block every time I try.  I may somehow manage to think about them every day, but I can’t write.  And then the guilt builds up and only makes it harder to contact them.  I haven’t gotten into this cycle with very many people, but when I have it’s been almost impossible to get out of.

And then I try to explain these things to people I’m “supposed to” have ties to, people who are very different from me both socially and cognitively.  There’s one person who’s repeatedly said things to me like “I know you don’t like to write to me” and no matter how many times I explain what’s actually going on, they still say things like that, a lot.

And sometimes I wonder whether everyone except me knows all this about me.  Like whether there’s conversations like “Yeah, she says she likes you, but then she disappears and forgets about you and never talks to you again, except maybe if she needs something.”  I hope not.  But I don’t know.  I always feel like I have to warn my friends up-front that this happens, because it’s so hard for me to stay in touch with people no matter how much I actually care about them.

And it’s hard to deal with this in a world where people measure how much you care by how much you think about someone and stay in touch with them.  I have the problem that I can care very much about someone, and in fact have a very close relationship with them, yet forget about them for weeks or months at a time, and fail to communicate with them for years at a time.  If my friends want to maintain a relationship with me, then they have to put in a larger amount of effort staying in touch with me than they normally would with someone who is more easily able to stay in touch, and this doesn’t seem fair.

And it still doesn’t seem fair even knowing that this is related to specific cognitive limitations.

And I still feel like a failure as a friend, because I can’t communicate with people as much as I want to, or think about them as much as I want to, or both.  I still don’t know what makes the difference between people I think about all the time but can’t communicate with, and people I forget even exist.  It certainly isn’t how close a friend they are, nor is it physical proximity.  There’s someone in particular that I think about frequently, but who I have not written to in probably seven years.  They wrote to me once a few years ago and I badly wanted to write back but no matter how hard I tried, I couldn’t.  It was like bashing my head against a brick wall.  And this person is someone I once had daily contact with, someone I owe my life to.

As far as I know, there’s a few things that overlap to cause this problem.

One of them is a memory problem where unless a memory is specifically being triggered all the time, I’m not going to remember it.  I have a very good memory for things that are triggered in a specific way, and a lousy memory for everything else.  I have been known to be unable to eat because my cupboards were closed and I couldn’t see the food so I didn’t know food existed.  I have the same problem with people.  If the person is not actually there, or not actively communicating with me right at that instant, then I don’t remember they exist.

Another of them is a form of inertia, where actions have to be triggered in specific ways in order to happen, much like memory has to be triggered.  This means that simply thinking about doing something is not enough to make me able to do that thing.  I have to be in a situation that triggers the right reaction.  And writing to people is not an action that is easy for me to trigger into existence.  So even if I remember you exist, I’m not necessarily going to be able to write to you.  This also explains why I’m more able to write to someone if there’s something I need — the need triggers the action.  Although need doesn’t always trigger an action, it all has to align correctly (so there’s someone I needed something from for years and I never could write to him because it wasn’t exactly aligned right to trigger the action of writing).

Another of them is a trouble with multitasking.  Staying in touch with people is not a simple action like picking up a ball.  It is a complex action that involves many different cognitive and physical aspects all at once.  This means that in order to happen it’s not enough for one thing to be triggered by one other thing.  Everything has to line up perfectly.  If even one part of this large chain of events is out of place, then I’m not able to do it.

The multitasking problem is also evident not just in the amount of parts it takes to make the action happen, but also in terms of paying attention to multiple things at once.  There’s a reason that I am able to stay in touch with one or two people, but not more than that.  One person takes up all of my attention, then I have very little attention left over for anyone else.

And this is all besides the fact that I’m pretty introverted by nature and I don’t automatically spend my time thinking about people.  I think if I were extroverted I would still have trouble keeping in touch with people, but it would be less trouble because my mind would be more drawn to thinking about them all the time.  I can go a long time without thinking about people at all.  Even when I write for my blog, it is easier for me to pay attention to what I am saying, than it is to pay attention to all the people who might be reading it.  I am always genuinely surprised how many readers I have, and sometimes alarmed by that fact.  Even though I feel like I am someone who cares deeply about people in both the general and the particular, my mind is not automatically drawn to thinking about people, as a topic.  Right now I mostly think about crocheting.

I’m sure there’s other things, many of them autism-related, that play into this as well.  And it doesn’t just affect friends, it affects family.  I have a horrible time staying in touch with my family, and I feel constantly guilty about it.  (Worse when I get letters from relatives that contain assumptions like “I know you don’t like writing to me”… ouch.)  Especially since I get a lot of support from my brothers at times, but never ever talk to them, rarely talk to my father, and only sometimes talk to my mother.  It doesn’t matter how much I care about or love someone, it can’t overcome all these difficulties.

So if you ever notice this pattern in my communication with you (this includes my inability, sometimes, to respond to blog comments), try to understand that it’s not personal.  I only have one person in my life that I’m in consistent contact with right now, and another person that I’m in semi-consistent contact with, and that’s usually about my limit right there.  Three people happens sometimes but it’s rare.  Right now it’s one and a half people — one very consistent contact (Anne), one less consistent contact (Laura), and a lot of very, very scattered contact with other friends and family.  And I can even forget Anne exists, even though that doesn’t happen as often as it would with other people because of a type of connection we share that as far as I know is completely unique — I can’t form that connection with people on command, it just exists, and I’ve never had that type of connection with anyone else.  And even with that deep, intimate connection I can occasionally forget her for a week or so.

And I’m very sorry, to the 15+ people I’ve cared deeply about and almost entirely lost contact with over the years.  If I could change anything about myself socially, this would be it.  But I’ve never been able to change it.  It makes me feel like I’m not capable of “real” friendship, even though I know I am.  I am lucky that I have some very tolerant friends.  People who take such lapses in contact personally, won’t do well in a friendship with me.  Not that I judge you if you do take it personally on an emotional level — we just may not be compatible if you do.   But do try to understand that my level of contact with you is not at all related to how much I love or care about you.

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.