Posted in Being human, Problems and solutions

Dreams of Robot Kittens

I’m watching a documentary about robots.

And it reminded me of a dream I had a long time ago.

Not a particularly important dream, just a cool dream.

In the dream, I was in a city.  Not sure what city, but a large city.  Kind of sprawling like San Jose, California, where I grew up.  But definitely not San Jose or any other city I’ve been to in real life.

Anyway, in this city, there were robot kittens.

They did not look like this robot cat, which I had as a kid:

petstercat
This is nothing at all like the robot kittens in the dream.  This is an eighties toy that moved, purred, or meowed if you clapped in different patterns.  One of the motors on mine didn’t work so it mostly went around in circles.  I guess I had a disabled robot cat.  I was quite fond of it.

Anyway, the kittens in the dream:  They were tiny.  They were clearly robots, they made no attempt at being realistic.  So they were usually shiny, plastic, and a combination of white and some other color.  (Sometimes a color a cat would be, sometimes something like blue or purple.)  They were also completely adorable.

They didn’t look quite like this, but these modern toys are much closer to what was in the dream than my Petster:

A pink and white plastic robot kitten.
Pink and white plastic robot kitten. Doesn’t look quite like what was in the dream, but much closer tan my old Petster.

Anyway, these robot kittens made their way around the city without really being noticed by a lot of people.  People expected them and got out of their way, but they did a pretty good job of staying out of poeple’s way.

Except the person they were going to.

Because these were delivery kittens.

And each kitten delivered a small amount of food to someone who needed food right then.

And it could be that you had no other source of food.

But it could also just be that you wanted convenient food delivered to you quickly.

Or that you couldn’t be bothered to cook right then.

Or that you were disabled and found cooking and meal planning and all that too difficult.

The kitten delivery service didn’t care why you needed food, they’d just give you food.

The kitten would find you, open up a hatch on its side, and there would be your food.

And then once the kitten was assured you’d gotten your food, it would go on its way back to wherever the delivery kittens go when they’re not out delivering food.

See, in this city, and presumably in the surrounding culture, food was considered a human right.  Everyone took this as a given.  That’s one reason they didn’t differentiate between why a person wanted the kitten delivery service.  The kitten delivery service was completely subsidized and it was anyone’s right to use it for any reason at any time.

Imagine that.  Food being considered a human right.  And being delivered discreetly to anyone who wants it for any reason, by a small army of robotic delivery-kittens.

Holy crap, the world we live in…

 

 

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Posted in medical, Problems and solutions

I definitely stand with the local nurses union.

Mel wearing a button put out by the nurse's union at UVM Medical Center. It reads, "Put Patients First!" and in small print, "Vermont Federation of Nurses & Other Health Professionals AFT-VT".
Mel wearing a button put out by the nurse’s union at UVM Medical Center. It reads, “Put Patients First!” and in small print, Vermont Federation of Nurses & Other Health Professionals AFT-VT.

I was in the hospital for a month recently.  I was able to see the conditions that nurses were working under.  It was bad.  I am 100% behind their efforts to fight for their rights, which were gearing up even while I was hospitalized:  Nurses were carrying signs through the halls, going places with them, wearing buttons, talking about things.  This has been prolonged and their signs are now all over town.

Earlier this month, Seven Days VT published an article called Nurses, UVM Medical Center Remain At Odds Over Contract which said:

Amidst a tense contract bargaining negotiation, nurses at the University of Vermont Medical Center announced at a press conference Friday morning that they had filed a complaint against the hospital with the National Labor Relations Board. The nurses allege twenty labor violations, including unlawful unilateral changes to staffing grids and unlawful ordering of employees to remove union buttons.

[…]

Julie MacMillan, a registered nurse and the union’s lead negotiator, said the nurses feel the community should be aware of the problems at the hospital. She said in past negotiation cycles, when the hospital was not in as good financial standing, nurses took cost of living adjustments so that they could keep serving the community. But now, as the hospital reaps enormous contract margins, she said the nurses have had enough. MacMillan said the union has been inspired by the successes of other labor movements across the country.

I hope they meet all of their goals.  The conditions they’re expected to work under are ridiculous.  They are right:  This is a safety issue, both for nurses and for patients.  I constantly saw nurses having to fight just to do their jobs under the amount of work they were expected to do.  All the ones I saw were trying very hard to help all their patients, and couldn’t.  One said she spends half her time on the job not doing nursing care, but ironing out problems caused by the hospital bureaucracy.  Watching her, I believe it.

And the conditions really are dangerous to patients — I was frequently in danger not because of malice or indifference, but because they were having to spread themselves too thin.  Which results in things like not noticing I take seizure medications.  Or one situation where I could no longer perform a small but vitally important medical task I normally do for myself, a nurse offered to do it for me, and I had to explain to her that I greatly appreciated the offer but that there was no way she had the time or resources necessary to do it.  Most of the dangers I faced from the hospital this time were tied in some way to short staffing, not to anything malicious on the part of the staff.  Who went out of their way to help as many patients as they could as thoroughly as they could, but nobody’s superhuman, and the long hours and lack of sufficient staffing take a serious toll.  Nonetheless, people were being their own small, quiet versions of Vasili Arkhopov every day — following their consciences even when it might be easier not to, and profoundly affecting, even saving, lives as a result.

Which is why there are signs everywhere that read NURSES FOR SAFE STAFFING and the like.

1_aV9IKGfEVQrwJVE1uWddBA.jpeg
Nurses carrying signs, one reads “Safe staffing saves lives!”

Safe, if you’re wondering, means patients don’t risk death or serious harm from the lack of adequate staffing.  The nurses I met this stay were almost all amazing, dedicated, and trying their hardest.  But without enough of them, without the resources to do their jobs, that’s just not enough.

I really, really hope their negotiations succeed.

Posted in medical, Problems and solutions, PSA

Keeping Your Symbiotes Happy: How to TRY Not To Get the Dreaded Butt Plague If You’re Tube Fed (C Diff Prevention PSA)

c-difficile
A clostridium difficile bacterium. You don’t want this little guy taking over your guts. Even when it’s not deadly, it’s highly contagious and dangerous.  And it can be both deadly and antibiotic-resistant.

I just got over a gnarly C Diff (clostridium difficile) infection that lasted from approximately November until May of this year.  Here’s a link to the Mayo Clinic’s page on C Diff if you want to know more about it. It wreaked havoc with my health, including my ability to absorb the steroids I depend on for survival, and I was away from home then hospitalized for a long time.  I had thought C Diff was something you got only from antibiotics or contact with an infected person.  I didn’t know I was at risk from other factors, especially being tube fed nothing but formula.  I was wrong.  I want to tell you about the risk factors that exist, especially in tube feeding and how to prevent that.

This is gonna be a little long, but there’s a bolded section at the end that basically tells you which nutrients you need to add to your diet to be more protective against C Diff if you’re on an elemental tubefeeding formula as your main source of nutrition.

The biggest risk factor for C Diff is frequent contact with the healthcare system.  Antibiotics are a risk factor.  So are some other medications such as acid reducers, which I have to use in large quantities because of my gastroparesis, reflux, and aspiration risk.  But the one risk factor that intrigued me the most, because it fit with the onset of my symptoms, is being tube fed nothing but a tube feeding formula without supplementing it in certain ways.

All of this is reputable science, by the way.  This isn’t some kind of fringe thing.  So we all have little symbiotes in our bodies.  That’s symbiotic bacteria that live in our guts and often help us out with all kinds of things you’d never expect.  Some of our symbiotes help protect us against C Diff.  I know this may gross some people out.  I think it’s amazing and cool that we have little symbiotes living inside us and helping us.  I want to keep my little symbiotes healthy and happy.  But I might be a very strange person, I admit.

Here’s an excellent overview from the World Journal of Gastroenterology:  Tube Feeding, the Microbiota, and Clostridium Difficile Infection.  So basically there’s a lot of risk factors involved with tube feeding elemental formulas, like the Osmolite that is my main food.  One of those us that the elemental diets seem to feed C Diff pretty well on its own.  But one of those risk factors is that the elemental formulas don’t contain some of the crucial nutrients that feed the symbiotes that protect us against C Diff in the first place.  And that is something you can possibly change even if your main diet still has to be an elemental formula.

blendtecfood
A Blendtec blender with assorted vegetables and water, close to all you need to make soup for your feeding tube.

I got a high-powered blender many years ago because I was having weirdly intense and specific cravings for vegetables.  I got a Blendtec, other people might get a Vitamix or similar.  These blenders are expensive, and mine was a gift from a family member, but they are the only way to blend down food well enough to safely pass through a J-tube.  In addition to a blender, I got a chinois (a kind of heavy-duty strainer), which lets me filter out any remaining tube-clogging residue while pushing through as much thick stuff as I can.  I have had no problem getting the resulting blends down my J-tube as long as I blend thoroughly and use the chinois vigorously.

blendersoup
Asparagus and sunchoke soup, ready to feed all my hungry little symbiotes!

Anyway, I started supplementing my Osmolite diet with blended vegetables.  I just went with whatever vegetables I seemed to be craving.  And they were oddly specific cravings sometimes.  I’d never eaten sunchokes in my life, and suddenly I was eating sunchokes constantly.  There turned out to be reasons for this most of the time.  My symbiotes must’ve been yelling “We’re hungry!  Feed us!” in whatever way they knew best.  When I added the blenderized vegetables to my diet, I felt a strong sense of well-being and my doctors told me there are nutrients in vegetables that we don’t fully understand yet.  So they were fully supportive in what I was doing.

My developmental disability services agency had people in it who were helping me cook these vegetable meals.  We’d basically cook the vegetables as if it was a regular meal, then stick it in the blender with some water, then strain it through the chinois.  I know a lot of people compare these sorts of things to baby food, but I honestly think a better comparison is soup.  So I just called it vegetable soup.  And then I would periodically put small amounts of it down my J-tube using a feeding syringe, although you could probably use a feeding bag and pump if you did it right and made sure it wouldn’t clog any tubing.

tubefeedsoup.jpg
Putting some asparagus and sunchoke soup into my MIC-KEY button J-tube using a 60 mL feeding syringe with a white Christmas tree attachment.

Anyway, at some point the guy who was doing most of the cooking quit to take a different job.  And my access to vegetables started getting more patchy.  I think the agency thought that because I was on Osmolite already, food prep for real vegetables was a luxury.  We were all about to find out how wrong that was.

I didn’t connect it to the vegetables, but for a month or two of less vegetables I was feeling lousy and telling my doctor something was going wrong in my body that was gonna bite us in the ass if we didn’t work out what it was.  I didn’t know I was gonna get the butt plague, mind you.  I just have a good instinct sometimes about things going wrong in my body.  Without further information, though, we couldn’t find anything wrong.

So the vegetables stopped around September.  By November I had nasty diarrhea every day.  Like shart-level diarrhea.  Leading to both yeast infections and bacterial infections of the vagina just for extra fun.  There’s no pretty way of describing it.  The butt plague is a nasty, nasty thing.

I’ve always had some absorption issues, but the C Diff kicked those into high gear.  My absorption of my meds, including steroids, became erratic.  Understand:  I make no cortisol in my body at all.  You can’t survive without cortisol.  Not being able to absorb my hydrocortisone properly or consistently played havoc with my entire body and health status in ways I couldn’t comprehend.  And that’s besides the ever-fluctuating levels of seizure meds and other things that shouldn’t fluctuate.

Dehydration was obviously an issue.  The dehydration kicked into high gear one week when I got about half the developmental disability staff hours I’m supposed to get, mostly through subs who didn’t know what they were doing, and didn’t get any extra water for several days.  I nearly passed out, had trouble breathing, had to raise my steroids just to be able to breathe.  Wildly inconsistent steroid levels even with the high doses resulted in swinging from too much to too little steroids on a dime.  It got dangerous.  My body temperature started going outright hypothermic (94.3 was the lowest), I had more diarrhea because low cortisol levels will do that, and when my steroids were high it suppressed my immune system and allowed the C Diff to flourish even more.  It was loads of fun.

At some point I gave my doctor the Bat Signal (“I’m gonna die, this is not a drill”) and he found the C Diff quickly.  The antibiotics worked and then suddenly didn’t work and I was hospitalized.  I’d already been living away from home about a month at that point due to a combination of being unsafe living alone and being too stubborn to go to the hospital.  (They tried to get me to go to the emergency room for about two straight months before I allowed someone to call 911.)  I got really weak from a combination of dehydration, adrenal insufficiency, and congenital myasthenic syndrome, and realized I was going to pass out or fall (I have severe osteoporosis and broken bones can trigger adrenal crisis) or shit on my friend’s floor or something, so I let her call an ambulance.  I was hospitalized immediately and stayed several weeks.

In the hospital there were two or three main issues to sort out.  One was the C Diff itself.  Another was my steroid situation.  So we discovered the inconsistent absorption and I was put on steroids through my chest port instead of my feeding tube.  This vastly improved things.  But I was still on a much higher dose than I should’ve been.  It turns out that some of my meds might affect the metabolism of steroids.

But more importantly, I probably have an additional medical condition that can come along with adrenal insufficiency (and also two other things I have), and that responds to steroids.  It makes my heart race and I get out of breath when I stand up sometimes.  So I’m still on an ungodly dose of steroids — transitioned back to getting them through my gut, at least, though — which puts me at continued risk for C Diff among many other nasty things.  My severe osteoporosis (I’m 37, I’m told my bones are more like 95-115 depending on the bone, I’ve broken ribs by sleeping on them wrong and have a stress fracture in my spine nobody knows where it came from) is partly from the steroids.  I’m at high diabetes risk.  Steroids are the most dangerous meds I take and the most necessary meds I take.  It’s an ugly balance to have to strike.  There are no good answers and for many people with severe adrenal insufficiency it’s the steroids that keep us alive that ultimately shorten our lifespans.

Anyway, the most important thing for you to know are which nutrients your symbiotes need that you’re not getting in an elemental formula like Osmolite or Nutrin.  There’s basically three important ones, although I’m sure there’s plenty of others:

  • Insoluble fibers
  • Resistant starches
  • Oligopolysaccharides

You can look up which vegetables contain the most of those nutrients, and figure out how best to get them for yourself.  Remember those sunchokes I was craving all the time for no apparent reason for the first time in your life?  Sunchokes turn out to have more oligopolysaccharides than any other vegetable on the planet.  Yeah, my symbiotes have me well-trained, I guess.

So definitely look up which vegetables you can get those things out of.  And then I’d say go with a combination of that knowledge and what vegetables feel right to be eating.  You might not have that this just feels right thing and that’s okay.  But if you do, run with it.  Every vegetable I was craving (and they were weirdly specific and intense cravings) turned out to be high in at least one of these three nutrient types. Your mileage may vary.  And always check out the actual scientific information on these vegetables, your instincts are no substitute for that.  But my gut instinct (no pun intended) turned out to be shockingly accurate, and you might find the same.

My doctors, for what it’s worth, are 100% supportive of my efforts to get vegetables back into my diet by any means necessary.  They agree with me that this was a major risk factor in my getting a C Diff infection.  And once infected, always at risk for the rest of my life.  So this is a very important thing to try and prevent, even if you seem to have no symptoms.  C Diff can be dangerous, is highly contagious (I was on isolation protocol my entire hospital stay even after I got over it) and can be resistant to antibiotics.  Even healthy people are turning up with C Diff these days.  Trust me, C Diff is something you absolutely do not want if you have any way of preventing it.

So if you remember nothing else from this post, remember those three nutrients:

  • Insoluble fibers
  • Resistant Starches
  • Oligopolysaccharides

Find ways to get these things into your body if at all possible.  Keep your little symbiotes happy, they need you and you need them, that’s how symbiosis works!  And if your symbiotes are happy, you’ll likely be happier (and healthier) too.  And stand a better chance of fighting off the Dreaded Butt Plague.

Photo on 5-14-18 at 5.38 AM
I am now happy, presumably C Diff free (although I have to watch out for it forever now), on a stable dose of steroids, and at home with my kitten for the first time in a couple months.  Try not to let any of this happen to you.  It was gnarly, it was dangerous, it could’ve killed me, it’s very contagious, you definitely don’t want this.

 

Posted in Developmental disability service system, HCBS, Problems and solutions

Developmental Disability Service Agencies: Can’t vs. Won’t

Photo on 5-12-18 at 5.23 PM
Mel holding up a prescription bottle of hydrocortisone, absolutely necessary to continued survival.

In my post on why Vasili Arkhipov should matter to everyone (and especially people in human services sometimes), I touched on what happens when my developmental disability service agency confuses what they can’t do with what they refuse to do.

I have a concrete example.

I take a particular medication four times a day.

This is a medication that is vital to my survival.  I don’t mean indirectly.  My body does not make even a little bit of a particular hormone that is necessary to survival.  Without getting a replacement, I will die.  There is no way around this.

There have been many complicated things preventing me from getting the right amount of this medication, throwing my health into jeopardy.  Some have to do with the agency and some don’t.

But my endocrinologist recently got angry about something the agency was doing.  One of the doses of the medication has to last me overnight.  It has a certain time it stays in effect.  You can’t change this time by wishing really hard or something.

So there was a staff shortage, and they started sending people earlier and earlier at night.  A medication that was intended to be taken at 9 pm started happening as early as 5:30 or 6 pm instead on days when it was more convenient to the agency.

I started waking up with trouble breathing, and having to take more of the medication to breathe through the night.

Needless to say he wrote an order saying the nighttime dose needs to be as late as possible.

But anyway, we recently discovered a lot of things that were going wrong with this medication.  Everything from the way my stomach was absorbing it, to the way my body seemed to be using it, to other conditions being affected by it, to the timing.  So we had to start over.  By start over I mean go through a long grueling period of figuring out how much I needed by chest port, resolving as many digestive issues as we could, working out dose conversions to my still-wonky guts, and coming up with a dose and timing schedule that will get me through the day without too many hiccups or surprises.

In order to do so, we had to throw out my agency’s schedule entirely.

See, before this, I was only getting the medication during the existing staff shifts when the people from the agency were at my house to administer medications.

And that didn’t turn out to fit the rhythms of the way this hormone works in anyone’s body, let alone mine.  Like not even a little.

But we had to go with what my body would actually need.

So now I have a medication I have to take four times a day, and every single one of those times is outside of the times when I have staff over to help me administer things.

Self-administering medication without, at least, prompting and checking from an actual human being, is not something I can do.  I know this.  I used to have an app designed specifically for people with brain injuries and other cognitive disabilities that wasn’t good enough to nag me into doing shit like this.

Mind you, I’ve downloaded Medisafe onto my phone.  But that’s a backup.  It’s not sufficient.  Medisafe alone, even with the thing where it texts someone if you don’t take it, isn’t enough.

And of course when my case managers come by, they’re all cheerful to tell me about how their boss told them about Medisafe.

But anyway, they were also just as eager to tell me that they as an agency were not capable of giving me the support to self-administer this one medication.

Support would, at minimum, consist of getting a phone call four times a day.

A fucking phone call.

That’s all.

Not someone to give it to me.

Not someone to physically be in the room.

Just someone to call, get me to initiate the whole process of doing it, and then verify that I’d done it.

They told me this is not possible.  That they can’t.

I told them that I understand they think they can’t, but that I need them to know I’m fully aware that they actually mean they refuse to.  Maybe not these case managers personally.  I don’t know who.  But failing to provide even minimal support for a life-saving medication is a refusal, not an impossibility.  And I refuse to let them get off the hook for saying it’s just impossible for them to support me on this.

They do more at other times than it would take to do this.

They just — someone, somewhere, in the agency — don’t want to provide this kind of support.

I will come up with other options, of course.  I already am.  I told them that if they refuse to support me on this then they need to help me find those other options at the very minimum.  But that it’s absolutely, absolutely refusal.  It’s not can’t, it’s won’t.

Agencies love to come up with random reasons they can’t do something when they really mean they refuse to, or don’t want to, or just plain won’t for whatever reason.

My agency seems to love to do it by reflex.  Often the very first thing I hear when I ask for help with something is that it’s impossible.  Even if it’s something like “Can someone plug my cell phone in at the end of the shift?”

At any rate, it’s really wonderful to hear how person-centered this agency’s services are these days.  You’d think there wouldn’t be anything more person-centered than figuring out a way for someone to get life-saving medication at the times their body needs it.  But person-centered appears to just mean I get the option of having a glorified social media profile stuck into my file, not that anything I get in the way of services actually revolves around what I need or want in life.  Because that’d make sense.

Make no mistake about it, though:  This is not something they can’t do, this is something that at some level they are refusing to do.  Because the agency is set up for the convenience of the agency, not for the convenience of those of us it claims to be there to help.  Which has results for us that range from annoying to life-threatening.

I agree with a friend’s assessment of the situation:  While I’m not in a congregate care setting (a place where lots of disabled people live together usually not by choice), in practice this is “sort of scattered-site congregate care”.  This is what agencies behave like in more traditional institutional settings, they just get to pretend it’s not happening like that if we all live in individual apartments of our own.

I don’t think Vasili Arkhipov would’ve said he couldn’t try and veto the captain’s order to nuke the Americans…


By the way, I do have every strategy currently possible in place for dealing with this situation.  I have stopgap measures.  I have people on my side.  I’m gonna need something more than this eventually.  But I don’t need suggestions or anything, so please don’t.  

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.

Stop the Shocks: Torture in Massachusetts

Stop the Shocks: Torture in Massachusetts

Click for full article by Cal Montgomery on stopping skin shock as torture at the Judge Rotenberg Center, an institution in Massachusetts. Spread this around.

Excerpt below:

2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.

And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.

Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.

The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).