Posted in Developmental disability, Developmental disability service system, HCBS, Self-advocacy

What my home means to me: I have so much to lose.

Nearly every night, I walk around my apartment in the dark. It’s easier to find my footing without the distraction of eyesight. I can feel my legs, my feet, the floor, the ground, the things that lie beneath. I touch the walls to better feel the building itself. Like all buildings, it has a personality. I find and touch the oldest parts of the building, wooden pillars in seemingly random places. They stretch from the bottom of the ground floor to the ceiling of the second floor.

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I explore my whole apartment in the dark, all the time. These days, sometimes I cry. People don’t understand what this place means to me. It’s more than any random home, which would mean a good deal already. I have so much more to lose than I used to know was possible.

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The dark allows an intimacy with the house that would be impossible in other circumstances. I can feel the way it wants to be all the things the best houses are. It wants to be a home, a real home. It wants people to live in it. It wants those people to be happy. It wants to protect them and make sure they’re safe. It wants them to be comfortable. It wants to be a haven, a place of refuge, a place of joy. And it genuinely loves the people who live in it.

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I’ve never lived in a house that was a home. Let alone one that wanted to be a home with every fiber of its being. I grew up in a house that wanted to start fights, to make violence worse, to scare and hurt and trap and imprison. It was such an unpleasant place that even from a young age I’d put myself through things I hated, like sleepovers, as long as they’d let me avoid the house. I never understood homesickness, only its opposite: dread that I’d be trapped there forever. I still have nightmares not about people or events but about being trapped alone in that house, unable to get away from it for the rest of my life. So I’m well aware that not all houses have the personality to be a true home, and how lucky I am to have found one.

I don’t normally watch horror, even cheesy horror. But I did watch every episode of Buffy. And only one truly got under my skin. It had a monster that lived in a hospital. You could only see it if you were crazy, delirious, or neurologically impaired. It sat on the ceiling above your bed and terrorized you while everyone else thought you were just hallucinating. Then it ate you.

Of all the things they showed on Buffy, that’s why I usually sleep with all the lights on. Embarrassing but true. When the lights go off, my brain starts imagining that damned ceiling monster.

The dark has always been a refuge from the pain, nausea, and chaos I associate with vision. It’s a place of calm and belonging. A place where things make sense and move slowly enough to understand. Where I can pick up all the shards of a world that comes through so fast it shatters inside my head. And just stare at the stained glass colors if that’s what happens. Or slowly put each piece back together in something like its original shape, so that something I saw earlier finally makes sense. The darkness itself feels alive, a warm and friendly presence: “Here in the shadows where everything blends, the darkness and me are the closest of friends.”

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This house makes it so I can be in the dark again, comfortably, and not be afraid of the ceiling monster.  The house protects me and makes me aware I am protected, even from my own fears.

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I’m not sure how often I’ve said this explicitly on this blog, but religion is central in my life and redwood forests are central to my religion. The connection I have with the particular forest I was born in, Redwood Terrace, is important to my ability to practice my religion. And while it’s true that this connection exists no matter where I go, it’s also true that it’s much easier to be immediately aware of that connection in some places than others. Like a lot of things in this realm, there’s no real way to explain it, things just work like that.

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Anyway, I find it easy to feel connected with Redwood Terrace from my apartment. Something is different about the ground around this building compared to other places around here. The apartment itself seems to help me connect with Redwood Terrace, as well as it seeming to have developed a friendship and connection with my best friend’s house, which has a similar personality.  All of these things mean I’m more able to practice my religion in this particular home than in any other home I’ve lived in. And that matters, even if I can’t explain to you how it works or why.

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I’ve got so much more to lose than I ever imagined was possible. It’s no longer just a matter of having my own place. I have my own place that I love and that loves me back. That puts things on a whole different level. I have an entire relationship with this place. It would be bad enough if they were trying to make me leave my home, any home I’ve ever had before. After all, there is never a valid reason to make anyone leave their home on the basis of disability. But now it’s not just my freedom I could lose. It’s an entire relationship with a place that matters more to me than I can explain.

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Nobody should ever have to explain or justify why they want to live in their own home. Nobody should ever be told that a perfectly normal desire to live at home is
in any way deviant, selfish, stubborn, denial, unrealistic, or unreasonable. And our society should no more accept this response to disability than we accept Victorian workhouses as a solution to poverty.

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But even if I shouldn’t have to explain, I do want to explain what my home means to me. Having my own place already means a lot more to me than I can express. And I’m not really able to write about that at the same time as writing about my specific home. But having a specific home I’m very attached to, means I have so much more to lose.

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You can’t just replace one home with another, any more than you can replace a human being with another. Even when you don’t mind moving, even when you choose to move, the new place is not the same as the old place. It should always be a choice.

It’s wrong for one person to have the power over another that it takes to tell them their disability means they have to leave their home. But it’s also wrong to use that power if you have it. And each person who uses this power over another human being, bears some of the responsibility for the damage done. And there’s always damage. Taken as a whole, the removal of disabled people from our homes is a large-scale crime against humanity.

Participating in such a thing isn’t trivial, no matter what your role.  Maybe you make the policy.  Maybe you enforce it.  Maybe you grudgingly go along with playing it out, but you play it out on us nonetheless.  Maybe you persuade us to give up ourhomes and move somewhere else.  So many things you could be doing, but it means you bear some responsibility for somethin terrible.  You can’t escape that.  I can’t sugar-coat it for you.

This is my home.

That’s all there is to it.

This is my home.  And anyone who participates in trying to take it away from me, is doing something terrible.

Because this is my home.  Living here is my right.  Having the assistance required to live here is my right.  Nobody gets to chaange that.  And anything that calls itself the Home and Community Based Services Waiver should never include services of a type that force or coerce anyone to move out of their own home.  They’re not home and community based if they force you to choose to leave your home and community for somewhere else, no matter where that somewhere else is located.  This is my home, you can’t just exchange it for another and pretend they’re the same.

Generations of self-advocates with developmental disabilities have fought for the right to live exactly where I am living now.  Lois Curtis fought for this.  Elaine Wilson fought for this.  They were two women with developmental and psychiatric disabilities, and don’t forget it.  They are what the Olmstead decision was all about.  Everyone has fought for this and I will not give it up lightly.  I will fight for it for me and for everyone who comes after me.  And it doesn’t matter if you don’t understand what it means to grow up thinking you’ll never live in your own home, but I did grow up that way and it nearly killed me.  I don’t want any child ever growing up again believing they’ll never have a chance at freedom and a home of their own if they have a disability. My apartment may not mean much to anyone else but it means the world to me and that’s the only thing that matters here.

This is my home.  You don’t get to tell me that’s not important, or that giving it up is inevitable or necessary.  I know better.  I know my rights.  THIS IS MY HOME.  And this is how much I have to lose.  And more.  I will fight to stay here with everything I have in me, and never stop fighting no matter what happens.  Because it’s not just my home at stake.  As long as any disabled person can be told their disability is too severe to live at home, none of us are truly free, because true freedom isn’t conditional.  THIS IS MY HOME.

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You’ll pry my apartment keys out of my cold dead fingers.





I wrote this post using Unity on my Accent 800 communication device.  

This is a reminder that not everyone on the Internet speaks to communiate and some of us use picture symbols to write.

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The screen of my Accent 800 communication device.  Above the words, I’ve pasted in the sequence of picture symbols it takes to get each word, so you can have some idea how it works.  You hit a set of symbols in sequence and it gives you the word you are looking for.

 

Posted in Developmental disability service system, HCBS

The apparent dignity in being a slob, and the terrifying catch-22 on the other end.

When you’re a slob, you don’t have to tell anyone that the reason you never did laundry in 9 months is because you didn’t know how despite being taught just as well as your brothers.

When you’re a slob, you don’t have to tell anyone that if you don’t change clothes for weeks or months on end it’s because dressing yourself has always ranged from difficult, slow, and exhausting to impossible depending on the circumstance.

When you’re a slob, nobody has to know that you actually don’t know how to shower, no matter how long you stay in there and go through the motions.

When you’re a slob, people think you’re gross but they don’t think you’re incompetent.  They think you’re the sort of person they don’t really want to smell, but you’re neither disabled, nor like some of the spoiled brats you went to school with who could’ve taken care of themselves but always had someone to do it for them so never learned.

When you’re a slob, people think you make bad choices but they don’t think you’re pathological.

When you’re a slob, people find you sort of relatable as a human being still.

When you’re a slob, and only a slob, they don’t tell you that you can’t live on your own and need your civil and human rights taken away for your own good.

There are other consequences to being a slob, mind you.  But sometimes it’s easier to be a slob in other people’s eyes — someone who’s made a choice, even if one they think is lazy and morally wrong — than to be a retard.  And I’m using that word advisedly, because that’s the word they’re thinking about you, not something sanitized and pretty.

And when you’re a slob, you can convince yourself you’re in control of all this, even if you’re not.

But seriously.  When you’re a slob, you get to be a human being.  Sometimes it’s just easier to say, “I’m a slob,” “I’m such a procrastinator,” “I don’t care about my appearance,” “I’m so gross,” whatever, keep it relatable, keep it human, but it’s a lie.

Because I don’t actually want to live in unsanitary living conditions.  I don’t want to laugh it all off over and over again.  I don’t want to watch my remaining functioning crumble out from under me because I’m physically and cognitively unable to keep my environment uncluttered enough to function.  These are not situations I have ever wanted.

But I’ve endured them.  Over and over again.  Allowing people to believe what they will.

For so many reasons.

So I could retain the dignity of being considered merely a flawed human being and not a walking pathology.

So people wouldn’t declare me too incompetent to live on my own.

So many reasons.

And then I’ve watched a friend with a developmental disability get told that the infected ulcers on her legs were the result of a “lifestyle choice” — both by Howard-Center-appointed testers who refused to acknowledge she was unable to bathe herself, and by VCIL who at the time catered to wheelchair users and she “only” used a cane — and I’ve wanted to spit nails.

Because that’s the fucking flipside, the catch-22 of being a slob.

Is they can just call you a slob when they want to deny you help you need.  Help that may be at the level of survival, like it was for my friend with her infected leg ulcers.  Like anyone would be so much of a slob that they’d get infections on their legs and go to the trouble to seek help to get services to get help bathing.  That’s not how it happens, people.

But all these things have a catch-22 angle to them.

Admit you need help and they’ll ‘help’ you right out of your right to live in your own home.

Insist on your right to live in your own home and they’ll hold you to impossibly high expectations and try to deny you help and call it a ‘lifestyle choice’ when you can’t do the things.

Be a slob and be denied help because slobs don’t need help they just need a kick in the pants for their laziness.

Admit you’re not a slob and if they believe you, you might be shunted into a nightmare world against your will.

There are no right ways to be developmentally disabled around here.

And I’m hearing horror stories.  About people suddenly being pushed to do things on their own they’ve never done before.  And if they manage it even once even for a little bit, they’re told they don’t need help, sent on their way, hours cut partially, or cut out of services altogether.

There are no right ways to be developmentally disabled around here.

We aren’t supposed to exist anymore.  We’ve become too inconvenient.  We’re the reason their agencies even exist, we’re the reason they have a paycheck, but we, ourselves, as people, as messy human beings who need their assistance to survive, are too inconvenient.  So they’re Xing us, one by one.  Or trying.  We need to resist Xing with everyting we’ve got.

For the time being, I'm still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can't frigging help it), and all. And I intend on remaining.
For the time being, I’m still here. Big, fat, hairy, smelly (the VNA is short-staffed, I can’t frigging help it), and all. And I intend on remaining.
Posted in Being human, Nature, redwoods

This is the heart of everything I do and everything I am.

 

Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.
Elaborate crocheted wall hanging depicting the forest floor of Redwood Terrace.

This is an excerpt from a book by Terry Pratchett. It’s called The Wee Free Men. It’s a children’s book set in the Discworld universe. Children’s books are where a lot of wisdom about the world is hidden. If it’s the right kind a children’s book.

“Oh, they’re around…somewhere,” said the Queen airily. “It’s all dreams, anyway. And dreams within dreams. You can’t rely on anything, little girl. Nothing is real. Nothing lasts. Everything goes. All you can do is learn to dream. And it’s too late for that. And I…I have had longer to learn.”

Tiffany wasn’t sure which of her thoughts was operating now. She was tired. She felt as though she was watching herself from above and a little behind. She saw herself set her boots firmly on the turf, and then…

…and then…

…and then, like someone rising from the clouds of a sleep, she felt the deep, deep Time below her. She sensed the breath of the downs and the distant roar of ancient, ancient seas trapped in millions of tiny shells. She thought of Granny Aching, under the turf, becoming part of the chalk again, part of the land under wave. She felt as if huge wheels, of time and stars, were turning slowly around her.

She opened her eyes and then, somewhere inside, opened her eyes again.

She heard the grass growing, and the sound of worms below the turf. She could feel the thousands of little lives around her, smell all the scents on the breeze, and see all the shades of the night.

The wheels of stars and years, of space and time, locked into place. She knew exactly where she was, and who she was, and what she was.

She swung a hand. The Queen tried to stop her, but she might as well have tried to stop a wheel of years. Tiffany’s hand caught her face and knocked her off her feet.

“Now I know why I never cried for Granny,” she said. “She has never left me.”

She leaned down, and centuries bent with her.

“The secret is not to dream,” she whispered. “The secret is to wake up. Waking up is harder. I have woken up and I am real. I know where I come from and I know where I’m going. You cannot fool me anymore. Or touch me. Or anything that is mine.”

I’ll never be like this again, she thought, as she saw the terror in the Queen’s face. I’ll never again feel as tall as the sky and as old as the hills and as strong as the sea. I’ve been given something for a while, and the price of it is that I have to give it back.

And the reward is giving it back, too. No human could live like this. You could spend a day looking at a flower to see how wonderful it is, and that wouldn’t get the milking done. No wonder we dream our way through our lives. To be awake, and see it all as it really is…no one could stand that for long.

Tiffany draws her strength and everything she is, from the land she was born on. In her case this is The Chalk, the Discworld equivalent of the Chiltern Hills chalk country that Terry Pratchett himself was from.

I also draw my strength and everything I am from the land I was born on. It’s a place called Redwood Terrace. It’s very small, and even people who live nearby have rarely heard of it.  But it means everything to me, and to the few other people I’ve heard of who were born there.

Everything described in the passage is something I have experienced with Redwood Terrace. That is why the place is sacred to me. That is why no matter where I go, I have roots that go down right into that soil. And I may live in Vermont, but a part of me is always in Redwood Terrace.  It doesn’t go away with distance.

Jar of dirt from Redwood Terrace.
Jar of dirt from Redwood Terrace.

The photograph at the beginning of this post is actually a wall hanging I made. I designed it, and I crocheted it. It is my tribute and reminder of the soil the forest floor in Redwood Terrace. I also keep a jar of that because my connection to that dirt and everything under and inside of it it is that important.  I’ve heard of someone else from Redwood Terrace who does the same.

I won’t say a lot more. Because there’s a point where you’re trying to talk about something that doesn’t really have words. And if you put too many words on it you just confuse people including yourself. But Terry Pratchett did an incredible job of writing around an experience that I have had with Redwood Terrace. And that other people I know who have that kind of strong ties to a particular place, they’ve experienced similar things as well.  The book may be children’s fantasy, but the description is something more real than you’ll get in a lot of nonfiction.  You find that in a lot of children’s books if you know where to look.

So this is really the heart of my existence. It’s not something I always talk about. But it is always there.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Posted in Being human, crochet

My friend can feel her feet.

My friend can feel her feet, and really that’s all that matters.

She spent forty years pretending to be a man.  She has finally come out as a woman and begun transitioning to living in the world as a woman.  Nearly everyone who knows her has reacted similarly — “Oh that makes sense, why didn’t I ever think of that?”

But then there’s the other reactions.

My friend can feel her feet for the first time in her life.  She can feel her body.  She was so disconnected from her body before that she didn’t notice a surgical scar she’d had on her arm in plain sight her entire life.  And now she can feel her feet.

Whenever I automatically feel my feet, it means I’m connected with the world, it means something is going right, I am doing the right thing.  I feel my feet every time I play my grandfather’s violin.

So when she told me she could feel her feet, I knew she was doing the right thing.

Her eyes have changed too.  I didn’t used to really know she had eyes.  Now they are impossible to miss, with tons of emotional depth, range, and complexity.  Strangers compliment her on them.

But some people react to her in a way that makes me uncomfortable.

She’s just trying to live her life, feel her feet, do what she needs to do.

Other people seem bound and determined to explain their theories of gender to her.

They seem to think that her announcing she exists is an invitation to a debate.  (It’s not.  And neither is this post.  If you want to debate gender, do it somewhere else, I will not approve your comments, I will not have a post about respecting my friend turn into a place to disrespect her.)

This is incredibly disrespectful.  She is a human being trying to live her life.  She is trying to live a life where she can feel her feet, have beautiful expressive eyes nobody’s seen before, be happy in her own skin.

Her existence is not an invitation to a debate.

Her existence isn’t the start of a philosophical discussion about whatever you happen to think gender is and how you think it works.

Her existence is not an invitation to explain to her exactly why you think she is how she is.  And what you think is really going on with her.

It doesn’t frigging matter if you understand what’s going on with her or not.

It really doesn’t.

I don’t understand gender.  I understand less about gender than the average human being does.  Because I’m genderless.  Gender identity is a foreign concept to me.  I don’t appear to have one, whatever it is.

But not all the world works like I do.  And not all the world should have to.  And I don’t feel insecure enough about my ignorance that I have to cook up an explanation for everything I don’t understand, and throw it in the face of everybody who experiences something I don’t.

Sometimes you’re not gonna understand.

Sometimes you’re not gonna know why something is so important to someone.

But none of that matters, actually.

I don’t have to understand gender identity to understand that it’s incredibly important to the vast majority of people on the planet.  Including my friend.

I don’t have to know why it’s important.

All I have to know is that when my friend lives her life as a woman, she can feel her feet.  She can feel as if her body is finally a part of her.  She can feel happy and fulfilled and just go about her life without thinking about trying to look male all the time.  She can show the world how deep and expressive her eyes are when she’s not living in hiding and fear.

Those are the only things that are important.

My opinions on gender — if I even have them — mean fuck-all in the scheme of her life.

The ways my experience of gender differ from hers — not important in terms of how she is leading  her life.

I don’t need to insert myself right into the big middle of everything related to her.  In fact the best thing I can possibly do is get out of the way and let her be herself.

If she wants to talk about gender she’ll bring it up.

Her existence is not an invitation to that conversation any more than my existence with a feeding tube is an invitation to a debate on assisted suicide.

Just have some respect.

For my part, I found out that she’s never worn shawls before.  She wanted to try colorful clothing.  She wanted the option to wear things that were feminine.  She’s never had these options before.  (And no, not everything she does and wears is stereotypically feminine.  She just hasn’t had the chance before.)  She loves to wrap herself in blankets, so I told her a shawl is like a socially acceptable usually-triangular blanket you can take anywhere.

So I’m crocheting her shawls.

Every stitch says “I already know you are a woman.”  Just in case she needs a reminder with all the other messages she’s getting.

I’ve made her two so far.  One is purple mohair lace.  The other is a sturdy wool in many bright colors that seem to suit her.  Because that’s the other thing.  Her soul used to be grey and in hiding and kind of reserved.  Ever since she came out, her soul has been all the bright colors you could imagine.  I’m not the only one who has remarked on these changes.

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The first shawl I crocheted my friend, a lacy purple mohair shawl.
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Closeup of the lacy purple mohair crocheted shawl with a lighter purple border.
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Mel holding up the full length of a thick wool shawl in bright striped colors of purple, pink, blue, and green.
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Mel modeling the back of the thick wool crocheted shawl in many colors.
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Showing the simple but elegant stitch pattern of the crocheted thick wool shawl in many colors.

You don’t need to make someone shawls to show your respect for her womanhood though.

And you don’t need to understand anything about gender.

All you have to understand is that living as a woman she can feel her feet and everything else.

It really comes down to that.

Not you.  Not your opinions.  Not your ideas about gender politics.  Get out of her way.  This is about her, not you.

Just her.

Living her life.

Which is not an invitation to a debate.

She is who she is.  Grant her the courtesy of treating her like it.

That’s all you need to do, all you need to know.

My friend can feel her feet.

My friend can express great depth of emotion in her eyes for the first time in her life.

Her soul shines in all these beautiful colors that were hidden before.

But look:

My.  Friend.  Can.  Feel.  Her.  Feet.

End of story.  Nothing else matters.

 

Posted in culture, family

It’s not a cowboy hat or an adventurer hat or a costume.

People react a lot to my hats.

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Mel wearing a brown brimmed hat I wear all the time.

Maybe it’s because I’m in Vermont.  I don’t know.  People come up with a lot of weird meanings for my hat.  They think it’s a cowboy hat.  Or an adventurer hat.  Or some kind of costume.  It’s not any of the above.  It’s my father’s hat.

Maybe it’s an Okie thing.  People wear hats.  Wearing hats has specific meanings I can’t put into words easily.  I can look back in generations of family photographs and find people wearing similar hats, similar clothes.

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Some of my Okie ancestors, with hats.

My father always wore a hat.  But he wore them for different reasons.

One of my favorite memories of my father and his hats was the way he’d wear it when he was headed out to do something important.  He might still be wearing his usual jeans and shirt, but the hat meant things were important and he was dressing up.  You could tell by how deliberately he put it on.

And he wore these hats as if the hats grew out of his head.

I saw hats in family photos, hats on family members, I saw the way people treated their hats, the way they touched their hats, the way they wore their hats.  Hats are important in my family and culture.

Ron holding baby Mel.
My dad in one of his hats holding me as a baby.
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My dad squatting in the woods in one of his hats.

When my father died, he sent me a lot of his hats, and a lot of his shirts and suspenders.  I began wearing his clothes, or his style of clothes, every day, including his hats.

People told me for the first time in my life I looked comfortable in my own skin.

Me in my dad's clothes
Me wearing my dad’s clothes and hat, feeling utterly natural.

It wasn’t a conscious thing.

But the clothes started looking like they grew on me, the same way they looked like they grew on him, the same way similar clothes look like they grew on many of our relatives who dress similarly.

I started feeling more connected to him.

It sounds like a cliché, but maybe some things are clichés for a reason:  Wearing his clothes made me able to feel connected to him, I found the parts of me that he left deep inside of me when I wasn’t looking.  It wasn’t about how I looked in the clothes, it was about how I felt in them.  I felt connected to him, connected to my family, connected to my culture.  I felt things that have no words, no names, more depth than you’d imagine from a set of clothing.

But then I always connected to the world well through objects and the connections between them.

And, it turns out, so did my father.

I continue to discover him inside of me in ways I could’ve never imagined.

I continue to discover the things he has passed down to me without word or instruction.

And those things, that love, are the most valuable things of all.  They form connections and bonds between people.  They’re important.

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Mel slouched over in bed wearing my dad’s clothes and hat, with my cat Igor looking on.
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Mel wearing one of my dad’s orange shirts and hats.

So when you see me in any of my dad’s hats.  It’s not a costume.  It’s not a cowboy hat.  It’s not an adventurer hat.  It’s a connection to things I didn’t even know were inside me, between me and my dad, between me and my family, between me and my culture.  It’s remembrance and love but it’s so much more.

People are often taught to view clothing as superficial and vain.  To view objects as just meaningless dead things.  But clothing can tell you a lot about where you come from.  It can connect you to your roots, however loving, uncomfortable, and complicated those roots might be.  It can be a reminder of who you really are.

I’m glad I wear my father’s hats.

 

Posted in Being human, Self-advocacy

I was one of the scary kids too, and I won’t be able to watch this either.

Please read this post if you can:  A documentary about “scary” kids scares me on behalf of the kids.

For part of my childhood I was one of those “scary” kids.  I was sent to a residential facility, psychiatric institutions, special ed, other things.  I’m glad nobody turned a camera on me in my worst moments.  I’m glad there is no video of me fighting with anyone, being taken down (for any reason at all or not), screaming for hours in restraints, going to therapy, none of it.  I’m glad the media didn’t take me out of the violent context I lived in and paint me as the “problem person with the problem”.  I’m glad the media wasn’t there.  I’m just glad they weren’t there.  I worry for these children.  I worry for children like these children.

I worry for children like the child I was and the children I knew who overlapped all the “problem child” systems that blend together at that age — child psychiatry, developmental disability, troubled teen, special education, juvie, foster care.

All of us were surrounded by extreme violence.

All of us at times reflected that violence whether in on ourselves or out towards other people or both.

All of us were singled out as uniquely the problem, with a problem in our brains, a problem in our minds, a problem in our emotions, a problem in our souls, all of the above.  And once you’re singled out that way, anything goes.  Literally anything.  It’s why the Judge Rotenberg Center can still get away with using skin shock to torture children like the child I was for a time.

We were children trying to survive environments we couldn’t cope with.  Every one of us.  The system failed all of us, and we all knew it.  Some of us survived, some of us didn’t, none of us came out unscathed.

All of us were singled out as the problem kid with problems, ignoring what surrounded all of us: violence, hopelessness, abuse, neglect, despair, bullying, torture, confusion, oppression.

What the media is doing to these children is its own form of violence.  It is an invasion.  It is telling our stories the way they see us, not the way we are.  It doesn’t ever show the whole picture, and focuses on us as mysteriously confusing dangerous burdensome people with possibly no future unless we can have it bludgeoned out of us by a brutal system that everyone wants to get us into.

I wouldn’t wish it on anyone.

Luckily, a lot of us make it out the other side.  A lot of us grow into responsible caring adults.  If we’re given the chance, the opportunity, chances and opportunities that are the exact opposite of what you get in the system.  It’s hard, it’s a rough road,  a long road, but it can be done.  I’ve done it.  I got help not from the system but from other people who’d traveled that road before me.  I owe everything to them.

What is being done to these children is obscene, invasive, its own form of violence.   I won’t be able to watch this thing either.  They are Xing these kids, and their souls are screaming.

Posted in Being human, Nature

Living stumps and the living dead: Feeding tubes aren’t unnatural

Mel wearing a hat, jeans, and a Green Mountain Self-Advocates t-shirt, with feeding tubes showing, standing next to an IV pole with a feeding bag on one side and a potted succulent on the other. There is an elaborate crocheted wall hanging showing different parts of the forest floor on a redwood forest. Including soil, water, slime molds, fungus, tree roots, plants, slugs, a snail, a newt, redwood cones, and random forest debris.
They say this is unnatural…

I need a couple of feeding tubes, and sometimes a chest port, to stay alive.  One of the feeding tubes drains fluid out of my partially paralyzed stomach so it doesn’t overflow into my lungs.  The other feeding tube goes straight into my small intestine, and you put all the food, water, and medication in there.  That bypasses my stomach, which doesn’t empty properly so most things just sit there or backflow into my lungs instead of being used.  People can need feeding tubes for lots of reasons, but in my case it’s to get around the fact that my stomach resembles a dead-end street.  Luckily you don’t really need your stomach for digestion.  Small intestines do it just fine.

There’s a lot of things people don’t understand about feeding tubes, but one of the objections I hear most often is that living with a feeding tube is ‘unnatural’.  It’s modern medicine run amok, going too far, keeping people alive who’d be better off dead, and lots of other cheery bullshit.  And the very idea creeps people out because it’s supposedly artificial, unnatural, and disturbing to even think about.  It’s hard to know where to begin with that kind of thing, but I have a lot of objections to the idea it’s unnatural.

First off, human beings using technology to keep each other alive is the most natural thing we could possibly do.  We are built to have compassion for each other, to take care of each other.  We are built to solve problems, both alone and as groups.  We pass on our knowledge and build on it from generation to generation.  We are skilled at making and improving on technology.  These are our natural skills, our natural instincts, and there is little more natural for a human being than using them.

Feeding tubes also aren’t that recent an invention.  They date back at least to ancient Egypt, where they were tubes stuck up people’s butts to try to get food into them that way.  Butt feeding tubes were the norm until people started figuring out how to use a tube down the throat to bypass the windpipe on the way to the stomach.  They used those for everything from torturing and force-feeding prisoners to making picky children eat food they didn’t want.  Butt tubes were still around though.  When  President Garfield was shot, they were able to keep him alive for awhile using a butt-based feeding tube.

It wasn’t until anesthesia made surgery possible and antibiotics reduced the infection risk, though, that people really made headway with the kind of feeding tubes I have.  These are implanted through a hole (stoma) directly into the stomach or intestine.  When done properly, these days, this is reasonably low-risk and reversible.  The hole heals if you take the tube out.  Even while the tube is in, it’s perfectly possible to eat by mouth if you’re capable of it.  Nothing about the tube itself will prevent you from doing that, only whatever condition is making feeding difficult in the first place.  So if you have the feeding tube and don’t need it anymore, you can get used to eating again before having it removed.

It may be obvious that I have a problem with the way people divide things into artificial and natural.  Lots of animals use tools and technology.  Lots of animals do things to solve problems.   We’re not different there.  The things we make are just as natural as the things beavers make.  Whether we, or beavers, cause problems with the things we make, is a completely different question.  But just the act of making things isn’t defying nature.  It can’t be.  That’s not possible.  And it’s perfectly in line with every natural human instinct out there.

But for people who find what human beings do hopelessly unnatural… here’s this other thing that happens:

A living stump next to a tree that is keeping it alive through its roots.
…I don’t know anyone who wouldn’t call this natural.

In case you don’t know what you’re looking at, that’s a couple of Douglas fir trees.  One of them is a regular tree, the other is a stump.  The stump is alive.   Even though it has no leaves to make food out of, the stump is still completely alive.

How is this possible?  The roots of the two trees are connected.  The tree sends nutrients to the stump, so that it doesn’t have to make its own food.  This can keep the stump alive indefinitely.  This happens all the time.  It’s tube feeding for trees.

Douglas firs, like the redwoods depicted in the wall hanging in my first photo, are a social species of tree.  Many social species of tree connect at the roots, either directly root to root, or through a network of roots and fungus.  They can send signals, nutrients, and other chemicals through the roots.  They even show preference for family and for trees that — however trees decide this — are friends.  Just because they’re a social species of plant and work very differently from us, doesn’t mean they don’t share with humans the desire to help each other survive.

I mean, I’m talking in terms that sound very human, but there’s no real words out there for saying what trees want and how.  All life  wants to be alive, though.  For social species, that often involves helping each other out.  That goes no matter what kind of life form you are and how different you are.

I’ve never met even the most ridiculous nature purist who’d claim trees are unnatural.  And if it’s not unnatural for trees to use their time and resources to feed each other when they can’t make their own food, it’s not unnatural for humans to find ways to do the same.  Including feeding tubes.

So don’t call my feeding tube unnatural.  It’s as natural as the redwood forest in the crocheted wall hanging next to me in the first picture.  And using technology to help each other survive is one of the most natural things human beings can possibly do.  All these tubes and machines don’t have to horrify you.  I’m a living stump, not the living dead.


Further information:

You can read all about the history of tubefeeding and more in Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhar O’Gorman.  I’d recommend the first half of the book much more than the second half, however.

The first half is well-researched information on tubefeeding in general.  The second half reads like a cross between a sales pitch for blenderized diets and regurgitated Michael Pollan stuff.  I use Osmolite for my main nutrition and supplement it with blenderized vegetables to get things you won’t find in elemental formulas.  But when you’re reading along and the book starts referring to food the author thinks is bad for you as “edible food-like substances” and all the recipes specify the vegetables need to be organic, seriously?  I don’t want orthorexia when I already can’t eat, thanks.  It does tell you how to properly blenderize food for a feeding tube, though.  It focuses on G-tube feeding and doesn’t mention the steps you have to do (like using a chinois) to make sure blenderized food can’t clog a longer and narrower J-tube, though.

If you’re interested in the social lives of trees, the following TED talk may be of interest:

Here is a link to a page with a transcript:  How Trees Talk To Each Other.

Books regarding plant communication, cooperation, and senses:

The Hidden Life of Trees: What They Feel, How They Communicate – Discoveries From A Secret World by Peter Wohlleben.  This is a combination of personal observations from decades in a German woodland, and scientific discoveries backing up those observations.  Living stumps are described in detail.

What A Plant Knows: A  Field Guide to the Senses by Daniel Chamovitz.  This one describes the sensory experiences of plants in a way that is pretty easy for a layperson to understand and dispels many popular myths about plant senses.  The things described are in line with the scientific knowledge at the time the book was written in 2012, most of which is likely to surprise people.  There is a lot of bullshit out there about plant senses, this is the real thing as far as we know right now.

Do not confuse these books with The Secret Life of Plants, which is largely garbage.  Be careful of information that comes from that particular book, it’s made its way into popular understanding but most of it is nonsense or misleading at best.

Posted in Being human

My grandfather’s violin.

To call my grandfather a rat bastard would be an understatement.  He was callous, cruel, and didn’t seem to care about the suffering he caused.  It’s hard to describe his cruelty without clichés:  Molesting children, torturing cats to death, running over dogs on purpose for the hell of it.  This was not what you’d call a nice man, or a good man.  And he did cause a lot of suffering and death.

I know you’re not supposed to speak ill of the dead.  But describing his character in detail is necessary to understand what I’m trying to say in this post.  Because it would be hard to overstate his cruelty to animals and humans alike.  The main danger in describing him is to overlook the fact that even the cruelest human beings are still human beings, not cartoon caricatures of evil.

Anyway, my grandfather repaired and built musical instruments.  When I was young, I started learning the violin.  I was good at it for my age.  I didn’t know how good, which was probably a good thing:  I was being bussed to the junior high orchestra at the age of six, when most students started at nine and didn’t join the junior high orchestra until, well, junior high.  I was there in first grade.

My grandfather loved music.  Lest I paint too rosy a picture of him, he performed blackface.  So he could even find ways to make music a bad thing.  But he acted most like a decent human being in connection to music, of any time I ever saw him.

There was a violin he’d had for years.  It was older than he was, a student violin made in a German factory around 1914.  These kind of violins varied a lot in quality.  This one was pretty good.  He kept it in good condition for decades, and when he learned I played the violin, he sent it to me.  No explanation.  No conditions on what I needed to do to earn it.  Nothing I had to do for him in return.  This in itself was unusual for him.

Photo on 2-13-18 at 3.24 PM.jpg

I have short arms.  And I was young.  So I couldn’t play this full-sized violin when I first got it.  I got to know it, instead.  I got to know it by the feel of the wood on my face, the smells, the sound of the body as I tapped it.  I got to know the blue fuzz inside the case, the little documents of its first sale, the history written in my grandfather’s old-fashioned handwriting, the smell of the old cake of rosin, the glint of mother-of-pearl on the bow, the smell and feel of the horsehair.  The violin became my friend.

Eventually I was able to play it.  Like always, I practiced all the time.  I loved playing, for its own sake.  I loved interacting with this friend in every way I could.  My arms and hands were small, and I had a neuromuscular condition that made it hard, painful, and tiring to hold it up at all, but I did all these things as long as I could, just to play it.

But then I had to repeat fourth grade in a new school.  This school had no music program, despite having a lot more money than the public school I had attended before that.  I fell out of practice.

I grew to fear this violin.  It was so old, I thought I’d break it.  I kept it with me into adulthood though.

And then one day in my mid-twenties I picked it up and started playing.  I was astonished.

I was not, and will never again be, good for my age at this point.  I’m too weak to put in the practice.  My technical skills have slipped.

But something else had grown inside me, with time.  Deepened.  And so had the violin.

So that when I played… I was no longer playing other people’s songs.  Songs were playing me.  Songs came out that talked about the redwood forest, my original home.  Songs came out that talked about everything that was happening around me and inside of me.  There was this resonating depth that I couldn’t shake.

And I could feel my feet.

Feeling my feet is always a good sign.  If I can feel my physical presence from head to toe, something is going very right.  It happens every time I pick up this violin and play it.

This violin came from my grandfather.  This thing that brings me in touch with the deepest parts of myself and the world around me, this lifelong friend and companion, this thing that has deepened me and deepened along with me.  Came from the guy who used to imitate the sounds of the cats he tortured, just to horrify me.

If you want to know what gives me hope in the world, it is that.

It is that good things can come from the worst places.  That some of the worst people we encounter can’t seem to help doing some things that are good, regardless of their intentions.

I’ve called myself the bleakest optimist you’re likely to meet.  It’s because I see the good in the world, but I don’t do it by ignoring the bad or pretending the bad is something other than what it is.

I think bleak optimism is what the world needs right now.

I think we need to understand that the world has people in it who torture cats for fun. And all kinds of other horrifying people and events.  But that sometimes they’ll give you a violin that does nothing but good.  For no apparent reason.

We need to be able to be realistic, yet to hope and see and create good things at the same time. It’s the only way to handle what the world has in store for everyone right now on so many levels.

And my grandfather’s violin is a good example of how I find that hope.

Posted in Californication, Problems and solutions

Denial won’t get you water. We need solutions that don’t involve playing pretend about what’s happening.

I used to run from the fact that I’m an Okie.  Hide from it.  Pretend it wasn’t there.  This is understandable:  I associated this part of my heritage with a massive collective, generational trauma kind of situation.  It was easier to pretend it didn’t exist.  But it still existed.  And I feel a lot more whole once I stopped running from it.  I’ve learned things about myself, my family, and my culture.  And I’ve learned what this history — even the bad parts — can teach me about the world, about what I take for granted, what I don’t, and how that differs from other people.  And that’s valuable information to have.

So background if you don’t know what an Okie is:  In this context, it’s a bunch of people who fled economic and environmental disaster in Oklahoma and surrounding states mostly during the thirties but some before that and some after that.  A lot of us, including my grandparents, came to California and worked the fields in the San Joaquin Valley.  (The major agricultural center of the state.)  We weren’t welcomed.  If you’ve heard of us at all, it’s probably from the Grapes of Wrath, which paints a limited picture.  We’re from pretty diverse backgrounds and have pretty diverse opinions.  By now, we’ve sort of blended in — sort of — and the open hate is mostly behind us although there are subtle reminders, and even a lot of Californians only vaguely know about us.  (Especially since a lot of Californians think the San Francisco area and the Los Angeles area are California, but I’m getting off track here.  Suffice to say California has its own version of flyover country and my father was born there, raised all over Kern and Tulare counties.)

So okay.  One thing I have always understood is that resources are limited.  That you can’t fuck around with the physical world around you and not have it fuck you around right back.  That you can’t live without water.  That no amount of denial, no matter how sophisticated a form it takes, not even any amount of money, can ultimately get around that:  You can’t live without water.  And you can’t fudge these things.  You can put off the inevitable by moving things around, but you’re only making things worse by using up resources faster instead of using them more wisely.

I grew up in and around Silicon Valley.  A place with a lot of people in it whose form of denial takes the form of wealth and technology.  They think throwing a ton of money, intellect, or technology at a problem will solve it.  When they aren’t busy just imagining that the limits of the real physical world will go away if they transcend their physical form using the power of positive thinking or bullshit along those lines.  In extreme forms, I’ve seen the technology thing take the form of “Resource shortages will stop existing if we pour all of our effort into creating a superhuman computer that will know how to synthesize elements from scratch.”

Guys, you still need raw materials to synthesize things from, even if that were possible, which I doubt it actually is.  And your belief that technology will simply continue accelerating, getting more and more sophisticated and amazing, into the indefinite future, is not born out by history.  At all.

And yeah we need people thinking about how to solve these problems.  And we need people inventing things to help us solve these problems.  But throwing all your energy and money and time into a supercomputer that’ll probably never exist, is not the way, guys.  And all of your thought, all of your invention, all of your innovation, it all has to be grounded in certain basic aspects to reality.  And there’s a lot of people in Silicon Valley and other technological hotspots who live in a dream world where they can’t even see the people working the assembly lines in the next room over, let alone the people digging up and refining the materials, growing and harvesting the food, the complex physical web of physical actions in physical reality that exists in order to prop them up in their technological dreamland.

My dad was a type of person I actually saw a lot of in Silicon Valley:  A rural Okie techie.  They acted, looked, and dressed different than the other techies, came from different roots, approached problems differently.  My father wanted to be a farmer, but small family farms were being driven out of existence by the horrors of corporate farming that’ve taken over large parts of California.  His grandfather, who never graduated junior high, believed strongly in education and had saved up to subsidize an education for his grandchildren.  My dad got a two-year degree and became an electronics technician.  He moved to the Bay Area to find work.  There’s lots of people like him.  People who, like him, grew up tinkering with electronics in the attics of their farms in their spare time, cobbling things together from radio parts.  People who combined inventiveness and practicality.

And he took that to his job.  Technically his job was to build electronics for particle physics experiments.  In reality his job was a lot more complicated than that.  He might be doing engineering, even though his job title and pay were technician because he had never been to school for engineering.  He might be teaching grad students in engineering who knew less than he did.  He might be digging ditches and setting up equipment.  His job drew really well on the skills he had and he was very valued there.

And like a lot of the Okie techies I’ve met, he had that streak of practicality, that understanding of the hard physical limitations of reality, that a lot of other techies seem to lack.  His parents came to California fleeing drought, dust storms, hard times, and the biggest manmade environmental disaster the world had seen at that point.  He grew up and worked on farms.  He knew where things came from.  All of us knew where things came from.  And we knew what happens when things run out.  And what happens when you run them out too fast.

Okies have been warning of a second dust bowl since at least the fifties.  The solutions found for the dust bowl have involved piping water around in ever-increasing quantities without changing much else.  Aquifers — underground stores of water — that had been around forever, that had huge quantities of water, are now being depleted.  The fields my family worked existed in a converted desert, water piped in from elsewhere.  Tulare and Kern counties are now the epicenter of the California water crisis.  I’ve seen the change in my lifetime.  And it’s only going to get worse.

You can’t live without water.

You can’t produce water by magic.  Not even technological magic.

You can run out of water.

You can’t play musical chairs with water, moving it around from one place to another, hoping you won’t be the one dehydrating to death or living on arsenic-tainted water when the music stops.

I’ve always been disturbed by the stock market.  I used to think it made no sense because I was dumb or hadn’t been raised by people who invested.  And who knows what all makes it hard for me to understand.  But I’ve realized part of it is it’s like a giant game of musical chairs where there’s not a lot of chairs and everyone’s running around moving the chairs around trying to conceal how few there are.

But at least stocks are sort-of imaginary.  Like they take a level of abstraction to even believe in.  They have serious consequences, because symbolic as they are, the things they deal with are based in physical reality, like everything, you know, actually, real.  But they’re really just ideas, immensely powerful ideas.  (This is one reason I’ve always found them hard to understand.)

Right now there’s people speculating on water like it’s a fucking stock.

Here’s the thing about water:  It runs out.

You can move it around in circles and use it and use it and use it and make money off it… and if you try that, you’re gonna kill a lot of people because we all need water.  You will run out of water if you do this.  You will.  There are no questions here.

I understand the specifics of California because I grew up there.  But this is affecting the entire world.  I live in Vermont.  I live next to a giant lake — almost but not quite made one of the Great Lakes.  These water speculators have been very interested in buying our water and making money off it.  This is going on all over the world.  It needs to be resisted whenever and wherever it happens.

You can’t live without water.

The real physical world has real physical limits.

All resources can run out if used badly.

These are things I know because I’m an Okie.

These are things you need to know too.

When you stop running from a problem, you can face it.

We need to face something about this:  It is already a crisis.  People are already dying.  In California, in the rest of the world.

Everything we do to destroy water destroys ourselves.

Speculating on water to make money is basically playing a gambling game with the future of every life form that depends on water (which is all of us):  This is evil and needs to be stopped.

The things that many corporations and wealthy individuals are doing to water and other resources are not things that will be solved by taking few or no showers, not flushing the toilet, drinking as little as possible, and not watering the lawn.

And all those farm laborers in the San Joaquin Valley who are having to buy water or drink arsenic-tainted water?  Let me just illustrate this for you if you don’t realize how fucked up it is.

The only real job I ever did and got paid for was on a horse farm in the San Joaquin Valley.  It involved a lot of hard physical work in blistering summer heat.  The San Joaquin Valley gets really frigging hot in the summer.  Easily 110 degrees in the shade, hotter in the sun.  So hot that where I lived, all the stores let you take your dogs inside because leaving them in the car would kill them, end of story.

You need a lot of water to do that kind of work in that heat.  And the corporate farms are using all their water on plants — often plants that get them a lot of money — and leaving none for their farmworkers.  The farmworkers have to buy their water or use tainted water.  People are dying.  This is obscene.  It’s also part of the nonsense reality lived in by people who seriously think that their money will protect them from drought and famine when their crops can no longer grow, or no longer be harvested.  Maybe for individuals, that’s true to a limited extent, but collectively, they’re even screwing themselves over in the long run.  And even if you live nowhere near California or the other real centers of this ongoing crisis, they’re screwing you over too.  If you have to eat and drink, you’re getting screwed over.  Money can cushion you for a little while, it won’t cushion everyone forever.

It alarms me how little many people understand the physical underpinnings of their own survival.  Where food and water come from, how they get in the ground, how they grow or are raised, how they’re pumped or harvested or slaughtered, how they’re gotten to you, all the people and animals and plants and fungi and bacteria doing their part in all this.  How fragile this is.  How our biggest obligation is to protect it because without it we have nothing.  And I mean nothing.

Anyway — as I said, lifestyle changes by ordinary people won’t do damn near enough.  Hell, even if everyone in California got their act together, and used water as wisely as humanly possible, at this point you’ve got more people there than the natural level of water there can possibly support indefinitely and you’re already dealing with the consequences.

I’m not saying this to make you hopeless.

I’m saying this because I hope someone with the power to do so will wrest control away from the people who are hell-bent on destroying basic physical things that nobody and nothing can live without.  Before things get even worse.  Things are already bad, going to get worse, but we still have a choice to change things so that they aren’t the worst of the possible worst.  (And if you think the worst of the possible worst is human beings not surviving, you haven’t grasped the enormity of the problem.)  And we have an obligation to do what we can.  An obligation to every person and every living thing who stands a chance of surviving even a little bit longer and suffering a little bit less if we change things.   Which is all of us, and our descendants, and all other living things.

I’m just a mostly-housebound disabled person blogging this from bed.  I’m saying these things because I have some hope that an Okie perspective on resource shortages may spur some people — people who can leave the house — into understanding what’s at stake, and figuring out what to do about it.  Figure out solutions but ground your solutions in practical reality, or they are no solutions at all.  And part of the solutions has to be — has to be — stopping various extremely wealthy people and corporations from literally ripping the ground out from under our feet, and our water and other necessities beneath it.

For a brief understanding of the water situation in California, you could do a lot worse than the documentary Water and Power: A California Heist which last I knew was available on Netflix, and for rental on Amazon and YouTube.  Here’s a trailer:

If you want to know about the history of the Dust Bowl, its causes, its consequences, and its later implications which are beginning to come true as warned, there’s a longer documentary series by Ken Burns called The Dust Bowl.  I learned things from it, and I’m an Okie.  But it’s that cultural foundation, learned without being formally taught in any way, that’s allowed me to have the perspective I have on the meaning of resources in general and water in particular.  If that or something similar isn’t in your background, you could learn a lot from watching it.  Most people have no idea how bad it was, and how much worse it eventually will be.  The story’s definitely told from a certain perspective that leaves a lot of people (like the original inhabitants, still there) out, but the basic physical facts are told in glaring excruciating detail by interviews with people who were there.  And that’s what you should get out of this:  What it was like, how it happened, and how the solutions aren’t solutions, and the likely consequences.

Here’s a trailer for that one:

Most Dust Bowl survivors are dead now.  They can’t tell you what it was like except as recorded voices in documentaries like that one.  And many survivors were already dead when it was made.

I feel like as an Okie descendant it’s my duty to pass on the knowledge that was passed on to me:  What resources are, what misusing them does, the fact that reality has hard physical limits that nobody and no thing and no amount of money or denial or fake quick fixes can ultimately outrun.  And why we need to work creatively within those limits and really damn fast, to build the best possible future for as many people as possible.

And as a Californian who lived through Enron, why privatization isn’t the solution (Water and Power gets into it in more depth, there’s devastating information about Australia).

And as a disabled person who’s experienced severe dehydration (from not being able to get enough water, from fluid loss, and from conditions that made it impossible for my body to properly use the water it had, at various times).  Like everything from can-barely-manage-it-at-home dehydration, to ER-level dehydration, to hospitalization-level dehydration, ICU-level dehydration.  To tell you, at the most visceral level possible, that is not how you want to die.

And this is already happening.  If it’s off in the future for you it’s only because you’re really lucky.  It’s happening right now.  All we can do is throw on the brakes and find a way to truly change how things are being done to the best extent possible within the limits of physical reality and not some distant dreamworld.

If you’re reading this, and can do so, please do more than I can do.  If you’ve convinced   that things are so terrible nobody can do anything so why try, please read my last post, “We’re doomed, so we can do whatever we want…” and then try to get your head out of your ass before you hurt someone.  Despair will kill more people faster and more cruelly than anything else we could possibly do.  It’s important to be able to stare reality straight in the face, without flinching away or denying it, and then stand up and say “I’ll do what I can, because it’s the right thing to do.”

We owe this to each other.  Hope doesn’t mean ignoring reality.  It means facing reality as honestly as possible, finding the point where “What I can do” and “What needs to be done” meets, and doing it, because it’s right.

Posted in Being human

“We’re doomed, so we can do whatever we want…”

I’m hearing it a lot lately.  A sense that the future is already doomed to be terrible no matter what we do, so why should we do anything, what could we possibly do that would make any difference at all?

I have a lot of thoughts on that.  They’re hard to put into words.  So I’ll tell you a true story.

A few years ago, I was dying.

Obviously, I’m still here, so something changed.  More on that later.  But, what’s important is, I knew I was dying.  Without anyone intervening, giving myself a year was a little too generous.  I was pretty sure I’d never see 34.

I kept coming close enough to death to touch it, close enough that if I had simply stopped trying to be alive, my body would have shut down and nobody would have known I had any say in the matter.  It was happening more and more often.  I was getting weaker.  I started passing out and becoming unable to breathe on my own.  I’d wake up at 3 in the morning to the sound of my bipap alarm going off.  This alarm was supposed to wake me up if the settings designed to jump-start my breathing again didn’t start me taking breaths on my own.  My head would be flopped so heavily on my chest that I couldn’t lift it, and the tissue in my neck was so strained it was excruciatingly painful.  I’d try to move my hands to press a button to call for help, but they were so weak I could barely move my fingers.  I’d realize that even though I was awake, I wasn’t breathing on my own even a little.  The alarm was still blaring.  The bipap was shoving a whole breath of air into my lungs, they’d deflate on their own, and then the bipap would shove another breath in.  I’d know I could die right then.  But I felt no emotion.  The alarm kept going.  I’d try to stay awake, but I’d get woozy and pass out, only to have this repeat a few times, alarm still going, and then in the morning I’d be able to move again, at least as well as I could move at the time, which wasn’t very.

I knew that eventually this would happen while I was awake and not already hooked up to the bipap.  And that if nobody saw me, I would die.  I also knew every time I got sick, I got much sicker than I should, and often became so weak that it took willpower to keep my blood pumping and my lungs breathing.  Weaker than some people I knew had been on the last days of their lives.  It got worse every time, and I knew it was only a matter of time before I got too weak to power through it with effort.  I could also feel, on a deep, instinctual level, the knowledge that my body was preparing to shut down for good.

I didn’t tell anyone how bad it was, not even the people closest to me.  But I was not in denial.  I was grappling with the emotional and moral implications of my impending death.  I just didn’t want to deal with other people’s reactions.  Later, when my father was dying of cancer, he didn’t tell anyone until he ended up in the hospital so sick that he’d been given a week.  (He turned out to have pneumonia, which they treated, but he died a few months later.)  I understood why he did that, but I began to realize that if I had died, it would’ve robbed my loved ones of a chance to say goodbye to me.  At any rate, I didn’t realize it at the time, but I did think about my own death a lot, and how it affected my life.

Obviously, I’m still here.  What happened was two different doctors happened to run two different tests just as time was becoming short.  They showed I had a severe hormone deficiency (the amount in my body was too small to measure, and it’s necessary for physical survival), and a neuromuscular disease.  Both of which were treatable.  So I survived.  But this isn’t one of those ~never give up hope for a cure~ stories.  One, I’m not cured by a longshot — instead of facing an inevitable slow decline into death like before, I now exist in a precarious state where, if I get the right support and treatment, my health is like a house of cards:  It can get very tall indeed, but one thing pulled out at the wrong moment and I could die in hours.  And two,  I had no reason to think anyone would figure out what was going wrong with my body, and most people in my position would have been diagnosed in autopsy.  In fact, it was phenomenal luck many times over that I hadn’t died before the time they actually found what was going on.  So the point is, I really had to face my death in the same way that anyone facing imminent death has to.  I had no realistic expectation of an out.

So where did this leave me?  Well, I lost my fear of death pretty early.  In fact, I had beautiful dreams about dying sometimes.  I didn’t have a death wish, mind you.  If I had, I wouldn’t be here.  I just had seen death closely enough to stop fearing it, and to find beauty in aspects of it.

Everyone handles their impending death differently.  I had a number of occasions to put it to the test:  I would wake up aspirating a large amount of stomach acid, and from then on, I would be taken to the hospital, knowing that from the moment I woke up choking on bile that this could be the aspiration pneumonia that would kill me.  I was rapidly too exhausted to put my affairs in order, or to do much in the fight against that pneumonia other than let doctors treat me, so I’d resign myself to uncertainty.  This happened over and over again.

I’ve heard people talk about how they’d feel bad if they were dying and had never traveled the world like they always want to.  But when I was faced by “My life could be over within hours or days,” that was not the kind of thing I regretted.  In fact, I could barely give a shit what I’d done in those regards.  But I was very preoccupied with who I’d been.  Had I been a person who acted from love to the best of my ability?  Had I been a moral person?  That was the kind of question that made me nervous.  I wasn’t sure I measured up to who I should have been.  I wasn’t sure I’d affected enough people’s lives for the better.  I’d resolve to do better if I got out of this.  With some success.  I’m far from perfect, but I think my focus and priorities have shifted.

But the reason I’m telling this story is because I feel like how we deal with our own personal mortality mirrors how we deal with the mortality of our entire species.  We are facing the very real prospect that either humans won’t survive a lot longer, or not many of us will survive much longer.

One response I hear a lot is, “We’re doomed anyway, so why does it matter what I do?”

And some people do respond to their own personal death in that way.  They start caring only about their own pleasure and stop giving a shit how they affect other people.

But the thing I discovered around my own death is — my end is not the end.  That’s an understandable but self-centered way of looking at life.  I’m not talking about life after death.  I have some guesses about that, but they can only ever be guesses until I experience it.  I’m talking about the fact that even if I am no longer in the world (whether death is the end for me, personally, or not), other people still will be.

I was going to die, but the rest of the world wasn’t, at least not right then.  And dying may have meant I needed to conserve my energy in ways that made it harder to do certain things, or any obvious thing, for other people.  But it didn’t mean I had lost the obligation to behave like a decent human being when it was possible to do so.  If anything, that obligation seemed more important than ever the closer I got to death.  If my life was going to mean anything, it was going to mean that I’d tried hard to do my best by other people, whether in big ways or small.

And this has really changed things for me.  I haven’t become some kind of saint.  I’m still saddled with the same confusion and self-centeredness that seems to plague human beings in general, but I make my best effort with what I’ve got.  Which is all any of us can do.

And I see a strong parallel here with the way people respond to the thought of human extinction.  “We’re screwed anyway, so might as well enjoy ourselves before we go out and forget about what we’re doing to the environment.”  It might seem like the end of our species should mean we’re let off the hook, even if our own personal death doesn’t.  After all, not only is any one individual person not going to be around, no other human being will be around either.  There’s a lot of problems with this, though.

I’m going to start from the idea that total human extinction is soon and inevitable.  Which it isn’t.  Yet.  But just saying it was.

We still have a responsibility to each other in the meantime.  The reality is that nobody gets out of life alive.  And yet most of us care about how we live in the time we’re still here.  Treating each other decently is part of that.  Because until we’re not here, we are here.  And while we are here, how we treat each other matters.  We can’t just throw everything to the winds and do whatever we feel like.  For one, that’s actually a recipe for misery and unsatisfaction, even if it doesn’t seem like one.  But also, it screws over everyone else we’re sharing the planet with in the meantime.  And if screwing people over is bad even though each person you screw over will one day, individually, be dead, that isn’t actually changed by the entire species being dead.

There’s also this slide of inevitability that keeps us passive.  One bad thing follows from the next bad thing follows from the next bad thing.  We haven’t stopped it, so we won’t likely stop it, so let the next bad thing continue and go about our lives.

But the thing is.  Again, even if it’s true we’re all universally doomed as a species (which it isn’t — yet).  It doesn’t mean that we have to kill as many of us off as soon as humanly possible.  Let’s say we knew that no matter what we did, nobody would be alive in 150 years.  Would that make it okay to make a decision to just continue escalating things until  it’s 75 years, and a huge bunch of people would die younger, and harder, and another huge bunch would never be born?  Killing us off as soon as humanly possible because you didn’t think it would affect you personally whether it’s 75 years or 150 years because ou won’t be here is the kind of mentality that got us into this.  If you don’t like it as things are now, how do you think your grandchildren or great-grandchildren will feel when they discover you could’ve at least ensured they’d grow up?  How do you think the last people to die will feel when they know they could’ve had more time, could’ve faced a less extreme end?

But also, equally important when talking about human extinction is that humans are not and never have been the only life on the planet, or the only ones that matter.  Very powerful people thinking humans are the only ones that matter, and only some humans at that, is a big part of what’s killing us.  If we all die off, it still matters how many species we take out with us.  It matters what we leave for the species most likely to survive us.  We can’t just sit here and pull down the roof over our heads.  That’d be like me deciding I’m dying anyway so I might as well blow up the whole hospital or something, who cares about everyone else there and what they might want.  There has been life for far longer than humans have been around, and life will doubtless outlast us.  Animals, plants, fungus, microscopic life of all kinds, all of these things deserve a chance.  Failing to give them the best chance possible is like nuking your entire city because you’ll be dead from cancer tomorrow anyway.   It’s selfish, destructive, and irresponsible.

So no matter what’s ahead — for you or for all of us — try like hell to contribute, to make the world better for other people, to stop terrible things from becoming even more terrible.  Nothing gets us out of that obligation, ever.  Sometimes we can do big things, sometimes we can do small things.  But always try to find what you can do to the best effect, and do something.  Hope isn’t always about knowing you won’t die right then.  Hope is sometimes about knowing you could die, even knowing you will die, and doing the right thing anyway, because it’s still the right thing to do.

[This post was written recently.  I kept it as a draft and planned to edit it.  But I’m posting as-is.]