Posted in Being human, Californication, culture, family, history, medical

Every part of your life makes your perspective vital to the world.

We all come to the world from a particular place. Each of us it’s a little different. Sometimes a lot different. Some of it is culture. Some of it is background and life experiences. Some of it is our families. Some of it is the way our body works. Some of it is location. There are so many things that influence our perspective on the world.

But we all have one particular perspective. And that perspective is important. Without many perspectives on the world, the world would be in a lot of trouble. We need people from different backgrounds, different thought patterns, lots of different things.

But every part of your perspective, everything that makes it up, is important. And that includes the things that seem to contradict each other. And all the things you’re ashamed of. Or afraid of. Or all the little details that seem to make things a little more complicated. Those things are all important to who you are, where you come from in the world, and what makes your perspective important.

I’ve talked before about being an Okie. I may have even talked about how ashamed I was and afraid I was for a long time of recognizing I was an Okie. There were a lot of reasons for this. But I could not understand myself, or my culture, or the things that made me different from my neighbors where I grew up.  Not without understanding both that I was an Okie and what an Okie is. And the history behind Okies in California.

Mel wearing an orange t-shirt that says "California Okie" with a picture of a redwood tree and a map of Oklahoma.
Mel wearing an orange t-shirt that says “California Okie” with a picture of a redwood tree and a map of Oklahoma.

But it goes beyond just being an Okie. There are tons of specifics to it. There is how long most of my family was in Oklahoma and the surrounding area before coming to California. There is why each specific part of my family came to California. There is when they came to California. There is what opportunities were open to them and not open to them compared to other Okies. There is what states they came from both originally and before they came to California. There is who stayed behind, who came to California, and who went back. And why. There is the specific ethnicities of different parts of my family.

There is also the fact that we left that San Joaquin Valley and ended up in Silicon Valley. There is the fact that my father was a very specific kind of person who existed in Silicon Valley, even though their presence was rarely acknowledged. Which is he was an Okie techie. There were Okies who left what were usually farm jobs and made it into some part of the Silicon Valley tech industry.

In my father’s case, that meant he was an electronics technician. He, like many Okie techies, came from a small farming or farm working background. He grew up tinkering with electronics in the attic of his farm. His high school in Kern County had an excellent program. Every year, they built a house. The carpentry class would build it. And the electronics class, which my father was in, would wire it. And so on. They would sell it as cheap as they could to a family who needed a home, and use the money for next year’s house. My father got practical experience with electronics while still in high school.

He went to a two-year college and got a degree that allowed him to be an electronics technician. But like many Okie techies, most of what he learned in the world came from practical experience of some kind.  His on-the-job experience gave him enough knowledge that he could do the work of an engineer without the schooling.  He even trained engineering grad students.

This all meant that I was born in San Mateo County in the redwoods. Because this was very close to the physics research facility where my dad had a job when I was born. And it meant when we left the redwoods I grew up in Silicon Valley, mostly San Jose. I have also lived in the San Joaquin Valley, Santa Cruz County, Santa Barbara County, and other places. But that’s the basic area I was in.

And that means that while my culture was Okie, this was not the culture I was surrounded by. And I was exposed to a lot of things that most Okies would not believe in. Like all the stuff I call California dreaming. A large, destructive part of California’s culture where a lot of people try to live in a dream world. It’s most famous I guess as a Hollywood thing. Because it’s easy to see that Hollywood is based on a lot of people’s dreams about the world. But it’s around a lot of mainstream Californian culture. There’s a whole branch of the Silicon Valley tech industry where people  live with their head in the clouds and don’t seem to have any idea that there is a basic physical world they have to live in. There are also the new agers who think you can wish physical reality into existence using only your mind.

And so I was exposed to all these ideas, even though within my family they got very short shrift. Because like anyone who’s done farm work pretty much knows that you depend on the physical world and you cannot wish it away. And any Okie with any sense remembers the dustbowl and how you could not wish or dream that mess away, and how people created that mess by ignoring the realities of their physical environment. So my cultural influences push me very far away from the sort of thinking that gives us dream worlds, and thinking the Singularity will save us or kill us or whatever, and things like The Secret and the Law Of Attraction. Which are a lot more connected within Californian culture than you would expect.

But exposure to those ideas while young led me to try them out. And I tried them out in a pretty spectacular way. And I never could shake a pretty iron sense of the real physical world, even though I did my best to pretend. And part of that is my cultural background kicking in. But I heard if you pretend something it’ll happen, so I tried my best to pretend reality didn’t exist. But I couldn’t pretend to myself at all. So these were these two influences fighting in my head. What I heard around me and what I kinda knew in my bones.

My exposure to those conflicting cultural values shapes my understanding of the world. If I had only been exposed to one or the other, or if I had come from a different direction, my perspective would be extremely different. And I do think my perspective on this gives me insight into things that are important.

There’s also the specifics of my family, like my personal specific family history. Three of my grandparents were Okies, the other was the daughter of Swedish immigrants. My mom’s family tended to be FDR Democrats, my father’s family were Republicans. Both of my parents had political and religious disagreements with their parents. There were frictions in the family over politics and religion. There is the combination of political liberalism or leftism and a sort of cultural conservatism or traditionalism that’s pretty hard to nail down in words, but that definitely exists in my family and in me. There’s a lot more diversity among Okies in this regard than you will ever hear. And these things factor into everything as well.

But all that, all those influences, all those oddly specific things about my personal, family, and cultural background. Those all and far more things that I could not get into, contribute to what my particular perspective is and what I have to offer based on that perspective. Even my weird little personal aversions to being an Okie, my attempts to hide from being an Okie, my attempts to become something I’m not, my final understanding that regardless of anything I am an Okie. All those things, all those twists and turns, are important to who I am.

It is all of these extremely specific things that are specific to each person that are very important in so many ways. And culture is just one part of what I am describing.

Like you can go into anything. And all the specifics matter.

Another example:  I have a severe kind of inertia. So severe that in the medical world it’s been diagnosed as a form of catatonia since I was a teenager. First just as a description and later as an actual diagnosis. Severe enough that sometimes I need help with physical movement through physical prompting. But also not always that severe, fluctuating a lot throughout my lifetime. And fluctuating a lot based on a lot of things. And something that started out not as severe and became more severe over time.

That means that I intuitively understand a lot of the mechanics of how prompting works and does not work. I intuitively understand the vulnerabilities created by inertia.  These vulnerabilities are not well-understood by most professionals or family. I understand how things can go right, and how things can go wrong. This is true of many of us who have this kind of inertia.

Some people have never consistently done a voluntary unprompted movement.  Unlike them, I have had a degree of privacy to develop certain abilities. When I was a certain age, I was able to go on the computer, in a room by myself, and dial in to BBSs.

A BBS, or Bulletin Board System, was a computer system or network that you dialed into using a modem. At its simplest, it would have message boards where people can leave messages for each other. Kind of like if you’ve ever used a web board for some topic or another. It could also have email, whether within the BBS or with an Internet feed. Sometimes it would have Usenet which was again kind of like a web board in its way. Sometimes it would have what we now call chat rooms. Sometimes it would just have the ability to chat with the sysop, or systems operator, who is the owner of the BBS. Sometimes it would even have Internet relay chat. But not all BBSs connected to the Internet. Many were one computer.  Some had their own small networks like NirvanaNet. Which I used a lot.

But my time on BBSs was a time when I could type anything into a computer screen, and watch whatever reaction I got back. At that age, anything I said or typed had a lot of echo to it. So it was not necessarily reflective of what I was thinking. Sometimes it was. But that was not consistent for me. It was formative to privately and anonymously type words into a screen and get words back. Even if the fruits of that experience were in no way immediately obvious.  My communication skills would never have been the same without that.

And there are people who have a lot of inertia. Who have the same awareness I have of how it works and does not work. But who because of either their life circumstances, or their degree and type of inertia, have never had that formative experience of typing with nobody seeing what you’re typing. Or speaking without anyone hearing what you are speaking. And as minor as that might sound to someone who doesn’t know what that means, it fundamentally and hugely affects many things about how you communicate and even what you can communicate.

It also affects what you can safely communicate about. Because if you are dependent completely on other people for your communication, there are things that have consequences if you say them. And some of those consequences may be having your communication taken away forever.

But even aside from the risks, the lack of the experience of ever having communication privacy has an enormous effect on a huge amount of things. For me, having the ability to at least some of the time, and for me it’s most of the time, communicate or even just use words in private means there’s a lot of things I am able to say. Including a lot of things about the mechanics of inertia. And the mechanics of prompting. And the inherent dangers of prompting that cannot ever be erased.

And talking about those dangers is hard for people who depend on physical prompting to communicate. Some people do it, some people try. But they can’t always manage it. And when they do manage it, they may face very severe consequences.

So there are these dangers built deeply into any way of helping someone overcome inertia. And I can’t get into all of what they are right now. I’m not always actually that good at describing the exact nature of them. But I am able to say they are there. I am able to say that they can’t go away.

I am able to say that they are different from, vastly different from, the dangers that most people are aware of. I am able to say they operate in ways that have absolutely nothing to do with the fucking ideomotor effect. That human beings are not Ouija boards. That the fact that this takes place does not mean communication does not take place. But also the people who create, develop, and promote the many different forms of assisted typing do not understand this either. I don’t think some of them want to understand it. But others they just can’t understand if they’re not aware of what the actual problems are. And of course because of the stakes, there’s a lot of pressure to not even acknowledge there is a problem. Or to oversimplify the problem.

And the problem is someone like me is in a position to know and understand the dangers very well, and to be able to say hey there are dangers here. And that is so specific to my position in the world. Like my exact experiences with inertia. My exact experiences with prompting and assisted typing. My exact fluctuations in abilities. My exact background in this entire area, my entire personal history, the ability I had to experiment with language in private for years without anyone knowing who I was and what I was saying and why I was saying it.

And I’m also in a position to understand that even saying there are dangers carries dangers for those who rely on assisted typing of one kind or another. I know that anything I say can be used as ammunition to try and shut down attempts to allow people to communicate. And I take that very seriously, so if that’s your position on this is that all assisted typing is nonsense, I can tell you that is wrong. And I know exactly why it is wrong. Because I have used it.

So I exist in this borderland that is an extremely useful borderland to exist in. And all the twists and turns, all the little details, give me a perspective that is important to the world. I know other people with this particular perspective. Just as I know other people of my basic cultural and family background, both general and weirdly specific.

I’m not saying that I’m uniquely important in my perspective. We all have, each one of us, because of all the specifics of everything about us, an important perspective. We need every perspective we have. Even, or maybe especially, where our perspectives contradict each other or disagree. It doesn’t mean every single one of us is right. But every single one of us has something important to give to the world in terms of how we see the world and how we react to it. And when we try to hard to force everyone into the same perspective, we lose that.

Even weird things matter. Like being seen as high IQ and being seen as low IQ, both officially. Having gone from an early entry college to special education high school in that order. All of these things create understandings of the world that each of us has. Each of us has weird little specifics in our life that all matter.

Often it’s the things we don’t want to know about ourselves, or don’t want to think about, that are important. It’s the things we’re ashamed of. It’s the things people give us crap for. It’s the things we’re afraid of. It’s the things that aren’t even true, but other people’s belief in them has changed our lives.

Painful as some of these things are to think about, the more we understand them, the more we accept that all these things are a part of us, the better equipped we are to understand where we’re coming from. The more you understand the perspective you’re coming from, the more you can contribute from that perspective. It lets you know your exact place in the world and that is a very powerful thing to know. It gives you choices. It gives you understanding. It gives you insights that you would not otherwise have. It gives you more of an in-depth comprehension of both the strengths and limitations of your particular point of view.  It makes you understand your place within human diversity, and the importance of that diversity in all its forms.  It makes you understand why and how it is that diversity can never be neatly summed up.  It lets you know how you can use all of this.

So I’ve used a lot of examples of my own life here. But that’s to illustrate something that applies to every single person on this planet. Our culture matters. Our background matters. Our family matters. Our life experiences matter. Our physical body’s makeup matters. Everything about us contributes to this. And the less we can hide from the parts of ourselves that we don’t want to see, and the things about this that are so painful we don’t want to look at them, the more powerful we can be. And the more powerful our perspectives and our use of those perspectives can be.

So I guess the short version of this is:  Know thyself. But know thyself in detail. Know thyself fearlessly or at least courageously. Know all parts of thyself. Know the parts of thyself you would rather not know. Know the parts of thyself that you are proud of, that you’re ashamed of, that you’re indifferent to, that you are afraid of, all of them. Know how they all fit together. Know the parts of thyself that seem like contradictions and like they throw everything else about you into question. If something scares or repulses you, look twice, and look harder, and overcome the fear enough to see whatever is really there. I guarantee it’s important.

This is not navel gazing. This is how to understand where you fit in the world, where your perspectives come from, what contributions this makes you capable of or even obligated to, and what you can do about it. And it will go on your whole life. But the more you understand, the more power you have to do something good in the world.

Posted in medical

Beware of medical fatalism.

I’ve experienced this for a long time, but several years ago I met a doctor who really brought into focus what the problem was.  It’s one way ableism can turn deadly, but you can’t always catch it because it sounds almost like normal medical advice.

I had a GJ-tube at the time.  This is a tube that goes into one hole into your stomach, but contains two sections, one of which ends in your stomach, one of which ends in your intestines.  This means that part of it winds through the inside of your stomach into your intestines.  But the stoma (hole) itself is just a single gastrostomy hole.

A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.
A labeled diagram of a common type of GJ-tube (gastrojejunal or gastrojejunostomy tube). Which is a type of feeding tube that goes in only one hole in the body but connects to both the stomach and intestines separately.

Anyway, I had two separate and unrelated problems.

One, the part of my tube that went into my intestines was rubbing on an ulcer right over a blood vessel, so a lot of blood was coming out of the tube.

Two, a giant nasty abscess had appeared on my stoma practically overnight.  Like one day it was a red spot, the next day it looked like a blister, the next day it was this giant two-inch monstrosity that had popped in several places and was oozing pus everywhere.  To make matters worse, it appeared to have a hole that opened deep into the stoma, so that stomach fluid flowed into it, making it impossible to keep clean.

I was seeing a surgeon to see what, if anything, he could do about the abscess.  Which, at this point, had been there for two months.  (Antibiotic scripts were being mismanaged which made it last far longer than it needed to and in potentially dangerous ways, according to the infectious diseases specialist I finally managed to see after four months of this.)

His immediate response:

“I can’t do anything.  Even if I could get rid of it, you’d just get another.”

This seemed like an odd statement to me.  I’d had my tube for years and never had more than minor skin complications.  I got compliments all the time on how well I took care of my stoma.  This was the only time something like this had happened.  And even if it was likely to happen again, that seemed like no reason to allow a giant painful disgusting infected pusball to fester indefinitely and get worse.

But I realized this wasn’t just his considered professional opinion when I mentioned offhand that I was soon going to get surgery to insert a separate J-tube to replace the GJ-tube and get rid of the ulcer.

“I don’t see the point in that.  Even if you make one ulcer go away, getting a new tube in a new spot will just rub somewhere else and create a new ulcer.”

That’s when I realized a pattern.

And the pattern wasn’t that he actually would have said this under ordinary circumstances.

The pattern was he had already written me and my situation off as not just unfixable, but there being no point to fixing it.  Then he wrote off any problems as inevitable and likely to recur.

Imagine if you took your child to the doctor for an ear infection, and were told, “We won’t treat that, he’ll get another anyway.”  Yes, he probably will get another anyway.  You still treat ear infections.

I’ve never gotten another abscess so far.  It’s been years.

I’ve never gotten another ulcer so far.  It’s been years.

But even if I did, those aren’t things you leave alone if you want to live.

And that’s the thing.

If you have a feeding tube, some people see you as half-dead already.

If you have a developmental disability, some people see you as half-dead already.

I knew a guy with a developmental disability who had to go to the emergency room for a bad infection.  His communication system was limited to actions, facial expressions, and seven signs in sign language, he had spent most of his life in a state institution, he was brown, and he was a ward of the state.  That makes him an unperson to most medical professionals.  They told his staff, “He won’t live out the night,” without even examining him.  Then they tried to walk out without ordering treatment.  She had to scream at them to get him basic, simple medical treatment that would’ve been given to anyone else. He got it, he got over the infection quickly.   This was at least 15 years ago and last I heard he’s still alive.

That’s standard.

I’ve gotten it more times than I can count.

A relative has a lot of health conditions (many of which run in the family), and at one point was told there was no point in treating them because she was in her late sixties at the time.  This meant to the doctors that she was likely to die soon anyway so what was the point?  She had to argue that her female relatives often live into their nineties in order to get any medical care at all at times.  That is not something she should’ve had to say.  Her medical decisions matter no matter what the average lifespan is.  She was facing a combination of age discrimination and ableism (some of her conditions are rare and complicated and they didn’t want to put in the effort of learning, and I’m sure there were assumptions about quality of life and better off dead anyway in there).

This means that in actual situations where I’m trying to do a risk-benefit analysis, it’s very hard for me to trust that the information I’m getting from doctors is accurate.  Because there are situations where it really is not worth intervening to deal with something that’s gonna come back anyway.  Where the treatment is more damaging than the condition.  I have a few of those (including one where the condition is harmless but unslghtly and the treatment is painful and risky, for example).  But when doctors act like that’s the default situation, it’s extremely hard to know if they’re telling you the truth or not.

And in the wrong situation it can kill you.  Or lead to lots of work and unpleasantness and illness that could be totally avoided.

Feeding tubes are definitely one area where this happens a lot.  Many doctors don’t really know a lot about feeding tubes, assume complications are the norm, and assume that anyone with a feeding tube has no quality of life worth preserving by keeping us alive anyway.  That combination means they’ll assume any problems are automatic and inevitable consequences of having a feeding tube at all.  That any complications shouldn’t be fixed.  Either because they’ll come back right away or because they can’t be fixed at all.  And that there’d be no point in fixing anything because why prolong or improve the life of someone suffering as badly as someone with a feeding tube anyway?

These are all potentially fatal assumptions.  Fatal fatalism, I guess.  If you have any kind of unusual medical equipment or conditions.  Or if you are in any way not valued by the medical profession.  Especially if you’re not valued in a way that makes them think of you as dead, half-dead, terminally ill, socially dead, better off dead, or just waiting to die. Then watch out for this like a hawk.  Always think of the ear infection analogy.  If you weren’t better off dead to them, would they treat this?  Do they repeat this advice no matter what your actual problem is?  This is not valid medical advice, this is prejudice dressed up as medical advice.  And it’s an excuse not to treat you.  And it could kill you.  So be careful.

Posted in Developmental disability service system

Passive-aggressive selective rule following.

Rules laywer playing card with a picture of a cyborg advisor, text reading: State-based actions don't apply to you or other permanents you control. (You don't lose the game due to having 0 or less life or drawing from an empty library. Your creatures aren't destroyed due to damage or deathtouch and aren't put into a graveyard due to having 0 or less toughness. Your planeswalkers aren't put into a graveyard if they have 0 loyalty. You don't put a legendary permanent into a graveyard if you control two with the same name. Counters aren't removed from your permanents due to game rules. Permanents you control attached or combined illegally remain on the battlefield. For complete rules and regulations, see rule 704.)
Rules lawyer playing card. Rules lawyering is a concept in role-playing games of a player who obsesses on obscure rules that benefit themselves only, to the point it interferes with everyone’s ability to play the game.

So there’s this common trick with developmental disability agencies, among many other types of agencies.  It’s deliberate, it’s passive-aggressive, and it’s obnoxious.

You start asking them to follow laws, regulations, or agency rules that would require they provide either more or better quality services.

They respond by discovering rules they’d never bothered following before, that allow them to provide less or lower quality services.  And then insisting that they absolutely must follow these rules.

I came to Vermont with an IPP.  They call them different things in different states.  In California it’s IPP (Individualized Program Plan), in Vermont it’s an ISA (Individualized Support Agreement).  It describes you and the type of services you need and why, at least in theory.  Usually it has goals and ways of reaching those goals.

I had the luck of having a very well-written IPP.  My first case manager in California had written an IPP on which I was unrecognizable to anyone who knew me, and she had literally made things up and deliberately left things off.  I had signed something saying I had been at the meeting, and she claimed that my signature meant I agreed to everything on the IPP.  When I objected, she claimed she wouldn’t be my case manager anymore and I was on my own.  (There is a way to be self-managed in California, but it turned out she was lying to me for over a year and someone was listed as my case manager, either her or someone else I never met.)  She told me if I didn’t like it, write it myself.  I was completely incapable of writing my own IPP.  I couldn’t even tell anyone what needed to be on it without being asked the precise right questions and having a great deal of difficulty answering them.

So I ended up contacting a disability rights activist from out of state who had worked in the DD system and written many IPP-like documents in his time.  He painstakingly asked me questions over AOL Instant Messenger for weeks and put together an accurate IPP, which then got put in my file as my official IPP, and I didn’t have IPP trouble from there on out.  It got modified over the years with time by different case managers but the basics stayed the same.  I’m very grateful to that person.

So when I moved to Vermont, my first case manager was as incompetent as my first case manager in California.  And part of my IPP involved a section on how to communicate with me in ways that were cognitively accessible to me.  I have problems with understanding language, and understanding certain concepts.  I often need things explained to me or rephrased.  At minimum.  He was asking me to do important things, that I couldn’t understand because he used jargon I was unfamiliar with.  When I asked him to explain, he either wouldn’t explain or would send over the same stack of papers I couldn’t read.  This kept happening, and the more it happened the more he’d insist I agree to do something I didn’t understand what I was agreeing to.  And I wouldn’t agree without understanding, and he started failing to communicate with me at all except to demand I agree to this thing.

There were other, worse things going on too, but I want to focus on the IPP.

So my IPP contained an entire section on how to effectively communicate with me.  I and my DPA both told him a zillion times to comply with this section of the IPP.  They wouldn’t.   (We were also asking that they stop sending two staff people who were incompetent to the point of dangerous med errors.  And one was crossing lines in terms of religious proselytizing and forcing me to use my own resources to promote his religion..   They kept sending them to my apartment no matter what I said, and if I turned them away I was being charted as “refusing all services” even though there were dozens of staff available to choose from who were able, willing, and even eager to work with me.  I was told nobody liked me and I had to take what I could get.  So there were other issues happening that we were fighting them over.)

But one day I got a letter in the mail saying that because of what they’d read in the IPP, they were recommending that I go to residential care for my safety and the safety of staff.  The only way I could avoid residential care is if I provided detailed documentation from my California psychiatrist and the Regional Center system of my behavior plan.  I didn’t have a behavior plan in California, so there were no documents to produce.  It turns out they’d found reference in my IPP to past aggressive behavior, and suddenly following my IPP became all-important if it meant shunting me into residential care to get rid of me.

Following the part of my IPP about communication accessibility, of course, never became a priority.

That’s an example of finding the rules they want to follow and then following them to the letter.  And doing so entirely as retaliation for asking them to follow some other rule they have no intention of following.  And then they can say, “Well you asked us to follow the rules, that’s what we’re doing!”  It’s usually in retaliation for making demands.  And since it’s within the letter of the law if not the spirit, it can be used to withhold services (including as retaliation) without appearing to break any rules.

So if they start discovering new rules, that’s one thing they might be doing.  It’s extremely manipulative on their part.  (Agencies always manipulate clients far more than clients manipulate agencies, but are quick to call us manipulative for things that aren’t.)

Sometimes they’ll even make up rules that never existed and pretend they’ve been rules all along.  Or create new rules and try to pretend they existed.

At one point I was told that in the 13 years I’d been receiving services from an agency, from a wide variety of staff and case managers, with a wide variety of attitudes towards services, something they’d been doing had been against the rules the entire time.  They said nobody had told me until now.  I don’t buy it.  They just wanted to stop providing a certain kind of assistance, and to claim that to get that assistance I’d have to leave my home.  They’ve had no problem over that 13 years telling me when there was a kind of assistance that was against their rules or that they wouldn’t provide, so I don’t buy that it was just nobody felt like they could tell me it was against the rules.

(It involves doing things for me without any pretense of Independence Theater involved.  Which, under federal law, they have to do if I can’t do something, or can’t do it consistently or safely.  They have never until now given me a shred of trouble over this issue except in the area of community access hours — at which point they had no problem telling me there was an issue — so I don’t buy anything they’re telling me about this.)

This is, again, retaliatory, and in this case pretty vicious retaliation.  And manipulative in more than one way.  They are attempting to convince me that their “service model” doesn’t support doing what they’ve been doing for the past 13 years, and that therefore I must leave my own home in order to receive the services I need.  They are attempting to do this by threatening to (or really going through with) do less and less for me, thereby putting my health and life in danger, and hoping that’ll herd me through the door into their other program.  This is both against federal disability law and massively unethical, but they don’t care about either of these things.  They get away with it, and they can claim to be following the rules, so they do it.  It’s simply an attempt to maneuver me where they want me, and punish me for complaining.  If I hadn’t told them to follow the rules, they’d never have discovered this and other rules to punish and maneuver me around with.  And they still — of course — magically haven’t discovered any of the rules we’ve been telling them to follow.  The actual rules that we know exist.

It should be noted that when I ask agencies to follow rules, it’s generally my safety at stake.  When agencies ask me to follow new or arbitrary rules, it’s generally not their safety at stake, and it generally puts my safety more at risk.  They have massive power over my life, I have very little over theirs, and this is one way of them misusing their power.  The situation is not equal in any way.  (More on false equality in another post, hopefully.)

So that’s the basic sequence of events:

  1. You ask them to follow a rule they are not following, that would help you if you followed it.
  2. They retaliate by finding a different rule (or making one up), one that hurts or inconveniences you, and following it to the letter.  This is punishment for asking them to follow rules.
  3. They will almost always fail to follow the rule you told them about.  If they do follow it, they will try to find ways to follow it in letter but not in spirit, or follow it in as small a way as they can get away with.
  4. They will, however, follow the obnoxious rule they found or made up, as thoroughly as humanly possible.
  5. They may say (sweetly and with a smile if they want to be extra nasty and Nice Lady Therapist about it) that they’re only following the rules like you said to do…

And so the mind games continue…

Posted in cats, death

Death can’t erase Nikki from the world.

Nikki in a kittyloaf position staring straight at the camera.
Nikki in a kittyloaf position staring straight at the camera.

Once you have existed, nothing can erase you from existence.

I’ve been thinking about Nikki.  Nikki is always in existence because she can’t be removed once she is there.  She may not be here, in this place, this time, where we can see her.

But she is here when she was kitty larva.

And she is here when she was a kitten exploring the world and forming her personality.

And she is here as she went into that gangly-legged elongated kitten phase.

And she is here as she became an adult cat, just barely.

And she is here as she matured into a real adult cat, and then matured further.

And she is here as she became middle–aged, for a cat.

And she is here as she got old.

And every single one of those things is part of her existence.

She is there sick and she is there healthy.

She is there in every mood she’s ever been in, everything she’s ever done.

It’s all indelibly marked onto the pieces of existence she was around for.

And somewhere in some other time those things always exist.

They can’t unexist.

And that’s besides all the people who cared about her, the people she cared about, the dog she fought with even over Skype, the trio of formerly-feral-kittens she grudgingly accepted and then loved and protected, the houses she protected, the Cat Things she got up to on her own that humans can’t possibly know about that had immense value to the world.

All of these things still exist because things don’t unexist just because time rolls on.

And now, she is buried just under the roots of a tree, and will physically go on to nourish all the things underground that will decompose her, and I think that’s beautiful.

And the less tangible aspects of who she was, that fiercely independent, stubborn, protective, dutiful on  her own terms, hard-to-sum-up personality she had, will go on in other ways just like she’s nourishing the plants and bacteria and fungus in the ground.  All those things get distilled into a particular expression of love that goes on to affect the world.  (This is not as separate from decomposition as it seems.  I’m working with the English language here.)

don’t just want to remember her when she was ‘in the prime of her life’ or something.  Everyone always wants to do that for some reason.  I want to remember her at every phase of her life.  I want to remember her when she was dying just as much as I want to remember her before that.  And I want to remember her during the long phase of chronic health problems that went on years before her death.  Like most people, she wasn’t always healthy, and pretending that part of her life didn’t happen doesn’t work for me.  She’s everything she ever was at every stage of her life, not just one piece of it.

I have my own ideas about what goes on (or not) after death, but they’re only ideas, and that’s all any of us can have.  I think people can forget how individual and powerful and not-to-be-fucked-with-sacred and important each person’s death is.  Death makes life possible, is impossible to separate from life, and is not the enemy.  But life matters.

And… most of what I’m talking about here, doesn’t require any particular set of beliefs about what happens after death.  Just that if you take time a certain way, the way we exist now is marked upon existence forever, both in right now and in the ripple effects we cause, which never go away.

So Nikki is gone, to us, right now, and that is cause for grief at the separation.

But all through her life, every moment of her life, is still there in the time Nikki was in when she was alive.  And everything and everyone she affected is still being affected.  And in those ways she can’t be un-existed just because she’s dead.

I’ve been meaning to write a series of posts about how I think about death.  Which is extremely complicated in some ways.  But this is how I feel when someone I know dies.  And this is how I feel about Nikki right now.

Posted in cats, death, poetry

R.I.P. Nikki

Nikki, a Siamese cat, looking watchful from a tree branch.
Nikki, a Siamese cat, looking watchful from a tree branch.

My best friend’s cat Nikki just died.  Nikki was an amazing cat, and very complicated and hard to sum up easily.  She was a lot like Fey in parts of her personality and body language, but Fey was a Gryffindor and Nikki was a Slytherin, for whatever reason.  She was, to my knowledge, 17, the same age as Fey when she died.

My favorite thing Anne ever wrote about her was Nikki the Guarding Cat.  There’s also Meet the Cats: Nikki.

She always lived her own way, and died her own way, fortunately peacefully while unconscious, despite it being bowel cancer.  She seemed to be in less and less pain towards the end, which is oddly how my father experienced his death from cancer.  (Not what you’d expect, but it happens.  He had no pain the last two weeks of his life, he said it just vanished and never came back.)

She was in many YouTube videos like these, with Brodie (who is Hufflepuff to the core):

He was the first of the younger cats (a trio of formerly feral littermates) to be able to approach her because his social skills are amazing and he gave her the respect she commanded.  (She always acted a little like royalty and expected to be treated as such.)

Brodie and Nikki touching foreheads with love and respect.
Brodie and Nikki touching foreheads with love and respect.

Brodie actually, while she was dying, mirrored her movements for 20 minutes one night, almost as if to show her that he’d be able to take over guard duty when she was gone and she didn’t have to worry about that.

All the other three cats (Coraline, Brodie, and Shadow) clustered around her and kept watch while she was dying.

Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her.
Nikki on the couch she spent most of her time on while dying, with Brodie, Coraline, and Shadow all lying down nearby keeping an eye on her and keeping her company.

Anyway, the only poem I can offer in tribute to her is by Longfellow, “The Light of Stars”:

The night is come, but not too soon;
  And sinking silently,
All silently, the little moon
  Drops down behind the sky.

There is no light in earth or heaven
  But the cold light of stars;
And the first watch of night is given
  To the red planet Mars.

Is it the tender star of love?
  The star of love and dreams?
O no! from that blue tent above,
  A hero’s armor gleams.

And earnest thoughts within me rise,
  When I behold afar,
Suspended in the evening skies,
  The shield of that red star.

O star of strength! I see thee stand
  And smile upon my pain;
Thou beckonest with thy mailèd hand,
  And I am strong again.

Within my breast there is no light
  But the cold light of stars;
I give the first watch of the night
  To the red planet Mars.

The star of the unconquered will,
  He rises in my breast,
Serene, and resolute, and still,
  And calm, and self-possessed.

And thou, too, whosoe’er thou art,
  That readest this brief psalm,
As one by one thy hopes depart,
  Be resolute and calm.

O fear not in a world like this,
  And thou shalt know erelong,
Know how sublime a thing it is
  To suffer and be strong.


Nikki, an elderly Siamese cat, on the couch.
Nikki on the couch.
Nikki standing on a fence watchfully, underneath her there is a red “BEWARE OF DOG” Sign that has been altered with yellow paper to read “BEWARE OF CAT“.

I would indeed beware of Nikki.  A cat who can never be summed up no matter what you do.  May she rest in peace.

Posted in Being human, death, Developmental disability, medical

Why I’d sometimes feel safer dying on a street corner than going to the hospital.

The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.
The IV pole in my hospital room during the stay described in this post. I spent days just staring at it making absolutely no sense of what I was seeing, but I must have snapped a picture of it at some point.

The thing is, on a street corner, at least someone would see what was happening to me.  

(TL;DR summary at end of post in bold.)

People have this idea of hospitals. You go to the hospital and you are safe. You are looked after. Someone is taking care of you. Someone is watching to make sure you’re OK. And if you’re not OK, someone will at least try to do something.

And that’s how it sometimes goes. That’s how it has sometimes gone for me. I am not going to say I have never had a good hospital experience. I am not going to say that there are not wonderful people going way above and beyond the call of duty, working in these hospitals. Often people working thankless jobs for long hours with little pay. And still dedicating a lot of their time to try and do their best by their patients. So don’t get me wrong, I am not saying that the image of what a hospital can be at its best never happens. But there’s a dark side and I have to talk about that.

See, sometimes there are patients who don’t matter. I have been a patient who doesn’t matter. And if you’re a patient who doesn’t matter, and you are in a ward where it is OK to abuse or neglect patient who don’t matter, and you are extremely sick, you will be lucky to get out alive.

I’m a patient who doesn’t matter for a lot of reasons.

I am on a feeding tube, which already means to many medical professionals that I am dead. I am maybe physically alive to them. But to many medical professionals, and I have heard this directly, once you have tubes or a trach or anything along those lines, people will see you as a corpse who happens to be still a little too lively. Or they see you as just a step away from death waiting to die.  Either way, not worth putting the time and energy into treating like a regular patient.

I also have a developmental disability which means I am not entirely human.

Most of the time I can’t speak, and that only adds to my inhumanity.

I am in so many ways an unperson.

There are other things that factor in, to larger and smaller degrees. There is everything from the way I interact socially, to the fact my gender can look ambiguous, to being fat. Lots of things add together big and small.

But they all add up to one thing: I am an unperson.

In the eyes of a lot of people, I am not a human being.  Iam somewhere midway between corpse and object and eyesore. Or even just a nuisance where my existence as a living being is an actual annoyance to some people. And they would just rather I stop annoying them.

I am not saying that all people see me that way. But it doesn’t take a lot. It just takes the wrong people in the wrong places. And I have been in the wrong place at the wrong time way too many times.

So that means I’ve had experiences like the following:

I have gone to the hospital for aspiration pneumonia. I am unable to eat and have been for a while. I try to tell them that and they ignore me. They tell me people get pneumonia without eating all the time.

I get very sick from the combination of antibiotics they’re giving me. I began vomiting uncontrollably.

I have a few things to make this extremely bad. One of which is a neuromuscular condition that makes you weaker the more you use a muscle. This is violent full body vomiting. And the more it happens the weaker I get.  I also have adrenal insufficiency, which means any illness will be worse, will drain your cortisol, and low cortisol causes its own life-threatening set of problems.  Including full-body muscle weakness.

I am on a cardiac ward,. This is called being overflow. Overflow means you’re a patient with one thing where you get put on a ward for another thing.  Because they don’t have beds on a ward with whatever specialty you’re supposed to be undder.

So I’m overflow on his cardiac ward. And cardiac wards are generally pretty quiet places.  The culture of this ward is they like it quiet.  At all costs, it turns out.

So their response to my vomiting is to shut the door and get my roommate out of there and ignore my call light.

But I am hitting the call light because I am getting weaker.  I am unable to clean myself.  I am shitting the bed.  I’m having trouble breathing and I am getting so weak I will soon be unable to move.

The first couple times, they’d answered my call light. But they stopped. And I thought the ward was just busy. Because one ward gets busy sometimes. You don’t get your goal and answered for a long time because there’s something else happening more important. And it was a cardiac ward, so I thought maybe someone having heart problems.

I know there was concern over what was happening to me. But it was not coming from the hospital workers. The nurses were ignoring me. The doctor said is his official position that he would not treat anything about pneumonia because pneumonia was all I’d come in for.  I didn’t know any of this until someone told me later.

See, my friend was not able to visit me. But she sent over one of her caregivers. That caregiver had been through cancer. She’d been in that hospital and had known many people who’d been in that hospital and had seen the worst of that hospital. And she came in and apparently what she saw was terrifying.

Every nurse on the ward was aware my call light was going off. Everyone knew why. I was vomiting very loudly. It was audible from the hall. My door was shut. No other lights were going off. Nobody was busy. Everyone was ignoring my existence in a very pointed way.

So the caregiver apparently started throwing my door open. And the nurses would come and shut it without saying a word. And she’d throw my door open again. And the nurses would come and shut it again. And this back-and-forth went on until the only part I remember happendd. Which is the caregiver shouting at the top of her lungs, “If you kill her, I will have every lawyer in Burlington down on this place!”

I didn’t realize this was about me. I just remember hearing it. I was at that point dealing with the combined effects of the pneumonia, the weakness from not having had a square meal in weeks already, the antibiotics and their side effects,  untreated congenital myasthenic syndrome, and untreated adrenal insufficiency.

So I could barely move. I remember thinking this out:   I was alone and I knew I was alone.  I needed to use whatever strength I had to get into a position where I was the most likely to survive. And that meant in that moment, climbing into a very odd position on the bed.

So the hospital bed was… like a hospital bed. The top of it was tilted upward. So I climbed onto that part. Just the top of the bed. And then I curled myself so that my legs were it one side of the bed, my torso was parallel to the top of the bed with my back facing the top of the bed, and my head was angled downward. So when I became unable to move, the vomit was most likely to pour out of my mouth not end up my lungs if I could help it.

This is not a position that anyone who is in a hospital within reach of help should ever have to be in. What I had to do, and the resources I had to muster, are far more typical of someone lost in the desert using the last of their strength to preserve their energy for rescue.

There’s a show called “I Shouldn’t Be Alive” where people talk about exactly these situations. The difference between the survival stories on that show and the survival stories I could tell, is not a difference in the physical and mental lengths you take to survive in situations where it shouldn’t quite be possible. The difference is their survival stories always have that happy ending that starts in the hospital. My survival stories always start in the hospital.

And while I am in the hospital I am enduring what these people endure in the desert, in the middle of the ocean, in remote wilderness places where there is no help. And yet this is the closest I can find my experiences anywhere on TV or anywhere else. That should say a whole lot about how people like me experience hospitals.

So they did as far as I know pretty much leave me to die or survive on my own steam. Doctors have said many times I should not have survived this. Doctors have said many times that I needed to be in the ICU. I’ve been told a lot of things. But I did survive it.

But it was a grueling, traumatic, dangerous, and totally unnecessary experience. That particular hospital stay is one of the worst experiences I’ve ever had with medical care.

It was not just being left for dead. It was this long, long period where I was alone in a way I have rarely been alone. The only time I saw another human being is when they came in to change my IV bags. And I was adrift and did not know what was happening. I didn’t even know if I was dead or alive.

I was very severely delirious. I was in more pain than I can ever remember being in. I was having a kind of seizure that meant that even in the absence of all these other thing it made time crawl, time just stretched out into eternity. So I pretty much felt like I had discovered the ninth circle of hell from Dante’s Inferno or something and it was located on that particular floor of  that particular hospital. When I even knew I was in the hospital.

After that experience with the curling up on the bed that was really the last lucid moment I remember. I remember wondering it one point whether when I died I was going to be aware I was dying. Because I knew that was happening. I know when Death is hanging around my hospital bed.  It’s something you learn to notice if you encounter enough. And Death was really my only companion for a lot of this experience.

So I got weirdly friendly with Death. But other than that it was like I was living in some kind of nightmare that never ended. The first thing I remember after curling up like that is the light being different, day being different I guess, and not even connecting with who I was, where I was. I thought there little dapples of sunlight all over the room. I thought I was the dapples of sunlight.  I thought that’s what I was, I didn’t know I was physically there. And I was all in pieces all scattered all over the room.

Pink insects ate my eyelashes. The clouds took on the form of ancient mythological creatures. These empty empty people showed up — gray black and white images of people that would appear in front of me and carry emptiness with them.  They vanished and carried even more emptiness when they did. There was a grid that went through the entire hospital of all the people who died there and were stuck on the grid. They invited me to join them. I didn’t know sometimes if I’d already died and joined them. A garden trellis appeared on the back wall one of the rooms.  Vines would go down in and out of it and back to it and down in and out of it and back to it all night long, covering me and uncovering me, endless time, endless pain.  All these things, disjointed, not coherent.

These things don’t sound like a lot. But they came with the most excruciating pain and the sense of time passing as slowly as possible. If you can imagine when you have really bad insomnia and you can’t sleep but you can’t really concentrate on anything either, so you’re just lying there with time seeming to go by like every second is a month. Like that only more.  And I was in that hospital for five weeks.

And not all of my experience that hospitalization was as bad as the start. In fact some of the neglect and abuse stopped due to other people advocating for me. But there was a long period of extreme neglect. And it was brutal.

And when I was able to think enough to make these thoughts, I was very aware of some things.

  • My life was in danger.
  • Nobody there cared that my life was in danger.
  • Because I was in the hospital people thought I was safe.
  • Nobody would know I was just in a room by myself without even a monitor.

Like usually they at least least have a pulse ox on you or something. They didn’t even have that.

And I was unable to do much for myself.  Being punished for that.  At one point they actually said that because I had a developmental disability, if I got used to shitting the bed I’d never want to use a toilet again.  I can’t fathom what world exists where shitting the bed is preferable to a toilet.  But that’s what they thought of me.

And I was being left alone for every single hour out of the day that did not involve changing an IV bag. And the people came to change the IV bags did not interact with me. Nor did they do anything check on my status.

So this was a terrible experience. But it was also an experience where I knew I was alone and I was in danger I rarely had means of getting word to anyone.

And I was in a place where people think you’re safe. So nobody would think that nobody was looking after me. Nobody would think that nobody cared that I hadn’t eaten. Nobody would think that nobody care that I got so weak I could barely breathe sometimes. Nobody would think this was happening or even that was possible for this to be happening.  And there’s so much more to this story than I can even tell in one blog post.  It’s actually much worse than I’ve described.

Which is exactly why I’ve said that there are times when I think I would be safer dying on the street corner then I would be safe in the hospital.

And I think that is true for many disabled people and many other people who are part of groups that are not considered fully human.

But people want so badly to believe that hospitals are a place of love and caring and safety.   People don’t want to hear this is a reality for the unperson patients, the unwanted patients, the annoying patients, the difficult patients, anyone who gets labeled such.  Which is often disabled people.

And yet if I talk to people who had to be in the hospital, especially people don’t matter to a lot of people with power, I hear stories like this one and worse all the time. And disabled people of all kinds have tons of stories like this and worse.

When Esmin Green (a black woman with a psych label and therefore didn’t matter to people on so many levels at once) dies in a hospital waiting room in full view of patients and staff and security guards for an hour and it’s all caught on camera, what the hell do people think is going on?  She, like all of us, was an entire human being and they ignored her humanity until she died in full view of lots of people who could’ve done something.

This happens.  This happens all the time.  It’s not just a matter of funding or something.  It’s a matter of certain people’s lives are not valued and certain places have cultures where that is okay.  There are cultures in some medical establishments where doctors and nurses abuse or neglect people they consider not really alive, not really people, or too annoying.  Sometimes this is as simple as choosing a blunter (more painful) needle to inject someone with.  Sometimes it’s as huge as leaving people to die or even doing things to hasten death.

This kind of shit happens all the time.  Listen to the stories told by those of us who’ve actually survived such ordeals.  Every single one of us is a real person.  Every single story we tell is important.  Even if it flies in the face of everything you want to believe about the safety of hospitals and the benevolence of the helping professions.  What you want to believe doesn’t change that people are being made to needlessly suffer and die for not being the right kind of person.

TL;DR:  Some people — often disabled people, poor people, people of color, and other people who can easily become people who don’t matter — experience severe medical discrimination in hospitals.  To the point that we may be simply left to die, or given the minimum possible medical care.  We may experience severe abuse and neglect in what is meant to be a place of safety.  Some of us survive it.  Some of us die.  Some of us feel that we’d at times be safer dying on a street corner than dying in a hospital.  Because in a hospital, we’re hidden in a room where nobody can see what’s happening to us except the people neglecting us.  At least if we died on a street corner, someone might see what happened.  Maybe.

Posted in Being human, joy, medical

The joy of J-tube feeding.

Picture of Harriet McBryde Johnson, next to the quote, "We need to confront the life-killing stereotype that says we're all about suffering. We need to bear witness to our pleasures."
Picture of Harriet McBryde Johnson, next to the quote, “We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.”

For decades, little noticed by the larger world, the disability rights movement has been mobilizing people from the back rooms and back wards, along with more privileged people like me, to speak plainly about our needs. We make demands. We litigate. Run for office. Seize the streets. Sit through the meetings. Mark up the drafts. That kind of work has changed the world and we need to continue to do it.

But we need to do something else besides, something that may be difficult but is, I think, vital. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures.

I’m talking in part about the pleasures we share with nondisabled people. For me, those include social engagement of all kinds: swapping stories, arguing hard, getting and giving a listening ear. A challenging professional life. Going to movies, concerts, and exhibits. Wearing a new pair of earrings. Savoring the afternoon hit of Dove dark chocolate. I enjoy those pleasures the same way nondisabled people do. There’s no impairment; disability makes no difference.

But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them, or wouldn’t experience them the same way, without our disabilities. I’m talking about pleasures that may seem a bit odd.

Harriet McBryde Johnson, Too Late To Die Young,

This one may take some explaining.

So I’m fed through a J-tube, short for jejunostomy tube.  That means a tube that delivers food directly to my small intestine.  This bypasses my stomach, which is partially paralyzed and may as well be a dead end where food is concerned.

So I don’t taste food, and I don’t feel the sensations of food in my stomach.  Instead, liquefied food goes into my intestines through a feeding pump, very slowly.  It has to go slowly because while your stomach can expand to take a whole meal, your intestines can’t.  So you have to drip it in slowly, usually over a period of hours.  Some people have to do it 24 hours for a full feeding, while other people can go faster.  I used to do 24-hour feedings, but now I do 8 hours or less depending on how I’m feeling.

I get two kinds of food.  One is a formula called Osmolite.  The other is homemade vegetable soups.  I cook the vegetables and put them in a high-tech blender that can liquefy anything.  Then I strain them through a chinois so they can’t possibly clog the tube.  The vegetables provide nutrients that the Osmolite does not, and help prevent c diff, which I got when I stopped eating vegetables this way.  For more information on the risks of c diff in people who are tube-fed formula without vegetables, you can read the paper Tube feeding, the microbiota, and clostridium difficile infection by Stephen JD O’Keefe from the World Journal of Gastroenterology.  Bottom line: The vegetables don’t just make me feel good, they also feed all my little symbiotes that help prevent c diff.

Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.
Mel eating by J-tube from a full feeding bag of asparagus and split pea soup.

So here’s the joy part:

I think most people experience this feeling, but they never get to experience it alone, so they probably don’t notice it.  Most people’s experience of food is wrapped up in sensations of the mouth and stomach.  Taste, texture, smell, fullness.  I don’t get any of that.  Which means I get to isolate a joyful and amazing feeling that most people never get to experience on its own.

There is a feeling when you are digesting a food that is truly good for you.  I get it from digesting vegetables most of all.  Here, I am eating asparagus and split pea soup.  The feeling is one of intense satisfaction, of rightness, of a subtle but inescapable pleasure that covers your entire body.

And once I am digesting this food, I get to feel that way without anything distracting me.  No taste, no texture, no sense of fullness.  Just the joy of digesting something my body very much needs.

I don’t think people who are fed by anything other than J-tube ever get to experience this feeling on its own.  It’s an amazing feeling.  I bet that if you ignored other sensations, you might find it underneath everything.  But it’s a unique experience to feel it on its own.  And that comes directly from being disabled and needing to bypass all the usual routes of food to your body.

Osmolite makes me feel like crap by the way.  I’m thinking of going rogue and designing my own diet.  But that would take a lot of work, so I’m not doing that right away.  (I have other reasons too, like my high diabetes risk and the lack of formulas that address that until you already have diabetes, which I’m trying to avoid.  It would be easier to design a diet similar to pre-diabetic diets, with specific attention to stuff that feeds your friendly symbiotes as well.  There’s a lot of foods that overlap there, like resistant starches.)

People think that tube-feeding, especially J-tube feeding where you don’t even get to feel a full stomach, takes all the joy out of eating.  But I have learned that when I digest foods that are good for me, I feel an intense kind of joy that I’m not sure most people ever get to feel as directly as I do.

And that’s what Harriet was talking about, these pleasures that are specific to being disabled.  Not joy in spite of disability but joy because of disability.  They are very real.  And in a world that sees disability as nothing but tragedy and suffering and a fate worse than death, they matter a lot.  Especially to people with feeding tubes and other things people are sometimes so terrified of they’d rather die.  I love life, I love my feeding tube, and I love the unique joy of eating delicious vegetables through a J-tube without the distractions of my mouth and stomach.


Posted in Being human

I have to carry my home in my heart.

Light shining through the canopy of a redwood forest in San Mateo County.
Canopy of Redwood Terrace with sun shining through.

You are not my home.  You are not my community.  Please stop.  Just stop.  Stop telling me you are these things.  Stop demanding my allegiance without giving anything in return but a handful of broken cobwebs tied together with bullshit.

I’m never going to learn your language.  And you will always consider me morally inferior for this.  Why should I even try?

It was hard enough learning this language.  The one I’m speaking to you now.  The one that was forced on me before I knew there were choices in the world, before I knew what language even was or meant.

The one that requires not one but multiple layers of translation.  Translation from experience to ideas.  Translation from ideas to words.  Translation into an entire context where my experience does not exist and can’t exist.  Chopping everything into jagged pieces that don’t match where they came from and rearranging them into something unrecognizable.

This is exhausting.  This takes everything I have and a lifetime of learning.  I can’t do more.  Stop demanding more.

And you expect — expect so deeply that you don’t even ask it out loud — that I renounce everything important to me.  My culture, my language, my religion, my social ties, my moral compass, love, connectedness, personal privacy, compassion, integrity, self-respect, depth, wholeness.  All of these things, and things that don’t even have names, you want me to leave behind.  In exchange for what?  You haven’t shown me a damn thing worth all that.

And you treat all of those things as if they never existed, as if they couldn’t have existed, not where I’m from.  And as if they are worthless, useless, baseless.  Even though they have roots deeper than you can see.

And in your world, there’s an invasion of personal privacy at or even before the beginning of every single conversation or social interaction.  You want me to divulge detailed, sensitive information that has been used to hurt me.  Every time I talk to you.  Every time.  And if I don’t, that will be used to hurt me.

If by some miracle that doesn’t take place, then the invasion will come later.  It will come when I say something totally innocent, and you give a response that demands an explanation.  Either you actually make the demand out loud.  Or you make assumptions that require I either accept being harmed, or give explanations that will also harm me.  I’ve heard this kind of thing called a double bind.  Whatever it is, I don’t like it.

This isn’t the only double bind.  Every interaction with any of you is a double bind.  That is, according to Google, “a situation in which a person is confronted with two irreconcilable demands or a choice between two undesirable courses of action.”  In my case, a choice between opening two cans of worms, in public, either of which you could use to break my heart and trample on my soul.

One of your most common double binds:  Take a knife and chop myself into pieces for you, or you’ll do it for me without my consent.

You promised home.  You promised community.  You promised belonging.  You promised justice.  You promised love.  You promised a lot of things.

You broke every promise. Every. Single. One.

I have to carry my home in my heart the way a turtle carries its home on its back.  I had no choice but to leave where I came from, but your world is worse than the one I left.  I understand you built it with the best intentions, but you know what they say about good intentions.

A friend once called me a perpetual outsider.  Certainly, among communities like yours, I am.

The world has a place for me though.  Even if you’ll never see it or acknowledge it, even if you try not to allow it.  An exact place, a precise place, a tiny place, a place at once private and connected to everything.   A place nobody can change or dislodge.  The redwoods showed me that.

This is not intended to apply to just one person or community, but to many connected experiences I’ve had over my lifetime.  And I’m far from the only person in the world who’s experienced this, or I probably wouldn’t post it.

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A tree with moss and fungus in Redwood Terrace photographed by my best friend.
Forest floor with redwood sorrel and the shadow of the photographer.
Forest floor in Redwood Terrace, with redwood sorrel.
Posted in family, history

America’s Atomic Veterans

Black and white photo of mushroom cloud in the distance with a number of men sitting on the ground in the desert, watching. Cacti are visible in between the men and the mushrom cloud.
Atomic bomb test in Yucca Flat, Nevada, April 22, 1952.

I was raised on stories of atomic bomb tests, witnessed from afar.  My father’s family were California Okies who lived and worked on a series of farms all over Kern County and Tulare County, California.  My father told childhood stories of seeing flashes on the other side of the Sierras, then watching the shock wave roll towards them.  The shock waves were often strong enough to  knock you out of bed, or knock water out of the irrigation canals.

I didn’t know this story, though, until my father wrote his memoirs in his late sixties or early seventies.  He was born in 1941, and this seems to take place in 1952:

One afternoon, I came home from school and there was a strange man in the living room talking to Dad and Mom.  He was one of Dad’s cousins and was home on leave from the Army.  I sat and listened with wide eyes as he described his participation in the atomic bomb tests in Nevada.  He along with many other soldiers had sat in a trench one mile from ground zero.  They had dark goggles and ear protection that was their only special equipment.  The bomb sat on a tall tower.  They were told not to look at the tower or to raise their heads above the edge of the trench.  Wen the bomb went off, Dad’s cousin saw a blinding flash, and was thrown backwards against the trench wall.  He said that the blast was deafening and that a sheet of hot sand whistled over his head.  We talked for a while and then he left.  I never saw him again.  Six years later, in 1958, I heard that he had died of leukemia.

-Ronald Baggs

That’d be my first cousin, twice removed.  (I had to look that up.)  Family history meets just plain history.

The American military carried out these bomb tests regularly, and often they tested the effects on American citizens.  Quite often, these were low-ranking military personnel who were not told what they were getting into and given no radiation protection.  This is besides the effects of fallout on civilians, which was a huge problem in Nevada, surounding areas, and anywhere else weather patterns happened to take it.  And testing on unwitting civilians, which happened as well.  And the civilians in the Pacific Islands who because of all kinds of racist and colonialist crap were even more disregarded by America and France and other places that nuked the crap out of the region than most people I just talked about.

The Only Country that Ever Nuked America Was America.

Sometimes, they even had their test subjects stand up and walk towards Ground Zero after the bomb went off.

Many people, like my grandpa’s cousin, didn’t survive long.

But many people did.  And many of them — and their children — had a lot of health problems that continue to this day, especially cancer.  They were sworn to secrecy (sometimes under penalty of treason), but many began breaking that silence in order to protest lack of compensation or apology for being made into human guinea pigs for nuclear weapons.

Today, they’re known as atomic veterans.  But most people don’t know, or only know in passing, that this happened, and what happened to them and their families.  The following Retro Report video is a good overview with lots of interviews with atomic vets and their families:

It makes the point that while nuclear testing officially stopped, there are still atomic vets from after that era:  People who were sent in to clean up earlier test sites.

This post may be late for Memorial Day, but on Memorial Day I always remember people like my grandfather’s cousin, completely forgotten casualties of the Cold War, killed by their own superiors in the military. They’re rarely given the recognition for this that they would be had they died in other military contexts.

Here’s a video shot by a guy whose dad died after being subjected to atomic testing in the Marines:

And he makes the also-good point that this is not a partisan issue, it’s a matter of basic respect.

So that’s what Memorial Day has had me thinking of.   I have lots of vets both living and dead in the family, but the only one I know of who died because of something that happened during his service was used as a lab rat in Nevada without being told.  My grandfather on the other side got a Purple Heart for a relatively minor injury in the Pacific Theater of World War II, but my other grandpa’s cousin got no recognition to my knowledge even though he died from the effects of the radiation.

Apparently they were usually sworn to secrecy under threat of treason charges, but he had no trouble telling family.  I imagine that was common.

They’re still fighting for recognition and compensation, to my knowledge.  The unfortunate joke among atomic vets — probably quite real — is that the government’s just waiting until most of them die.

And most people don’t even know they exist.

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

Your Right to a Community Life: A Guide to Home and Community Based Services Advocacy

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Your Right To A Community Life: A Guide to Home and Community Based Services Advocacy

Exactly what it says on the tin.  This is a guide for people with developmental disabilities in United States, receiving services under an HCBS (Home and Community Based Services) Medicaid waiver program.  Which includes me.

It’s in PDF format:

Your Right to a Community Life: A Guide to Home and Community Based Services Advocacy

And anyone receiving or trying to receive these services should read it so you know your rights under federal law and know how to fight for them regardless of what BS you’re told in the meantime.