Posted in Being human, Developmental disability, Developmental disability service system, disability rights, HCBS, Self-advocacy, Values & Ethics

Good agencies make people better, bad agencies make people worse.

Something I haven’t been able to say, but is finally possible to say pretty clearly and directly. Here’s a very simplistic way of describing how to tell a good agency from a bad one:

Insert people as staff or management or whatever other jobs there are.

See if they treat their clients better, worse, or the same just by being there.

I don’t believe in “good guys” or “bad guys”, let alone something as simplistic as being able to tell by what color hat someone’s wearing. But sometimes you have to simplify things to communicate them. Like most people, I like to think of myself as a decent human being. And here I am wearing a black hat. It’s my favorite of my own hats, like the ones I bought for myself. Most of my favorite hats are actually brown and inherited from my dad. Make of that what you will.

A good agency will, by the way it’s structured, encourage people to behave with respect, responsibility, and ethics.

A bad agency will do the opposite.

A bad agency will make it so that it requires a great deal of effort to behave like a decent human being even if you’re trying really hard to do so.

A good agency will make it so that the average person will go in and do better than they otherwise would have.

A good agency will make it so that someone going in with malicious intentions will find it hard to act on those intentions or last long within the agency if they manage it.

Put simply: A good agency will make it easy to be good and hard to be bad. A bad agency will make it easy to be bad and hard to be good. Good agencies bring out the best in people, bad agencies bring out the worst in people.

A very good agency will change many people with malicious intentions for the better, through means that are themselves good. A very bad agency will change many people with excellent intentions for the worse, through means that are ethically muddy at best and outright evil at worst.

All of this is simplistically worded. But hopefully you know what I mean. I’ve spent a long time struggling to find words for this. I’m still not there yet. Life is more complicated than a cartoon version of right and wrong. But a good place makes it easy to do the right thing and encourages everyone in that direction, and a bad place does the opposite. Even if it’s never that simple. Which, of course, it isn’t.

But I’m excited that I’m able to even say this much.

Because I’m getting sick of having to add disclaimers to everything I say about HCBS or medical services like “I know there’s good people here, but…” Of course there’s “good people” here. There’s every kind of people everywhere. But that isn’t what makes an agency good or bad. Also, I genuinely don’t believe in the existence of ‘good guys’ and ‘bad guys’ so all of this is an oversimplified way of describing things anyway. But to be able to describe this at all is an enormous relief.

Also, this is one aspect of how agencies operate. This is one aspect of what makes agencies better or worse. And this is a description of a tendency, not something that’s written in stone and never changes.

But it is something.

And I was able to say it.

And given how difficult writing is lately, that feels pretty good. It also feels good to finally be able to say this without practically having to write a novel to do it. I’m tired of having to constantly reassure people that I understand they are often coming in with good intentions, that calling an agency bad is not the same as making everyone who works there ‘bad guys’, or that I don’t even believe in good guys and bad guys in the first place. And never being able to even get to a discussion of what’s happening.

I’m not good at summarizing even at the best of times. But here’s a tl;dr summary to the best of my abilities:

TL;DR: Good agencies make it easy to do good things and hard to do bad things, regardless of what kind of intent and knowledge you come in with. Bad agencies make it easy to do bad things and hard to do good things, regardless of what kind of intent and knowledge you come in with. I’m aware how oversimplified this is, but I have had a lot of trouble writing anything suitable for blogging despite many ideas of things to write. So I have managed to describe one small piece of how to tell if an agency or organization is, generally speaking, a good place or not or somewhere in between. And I’m glad I was able to do that.

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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.