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

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

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

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

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

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

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

A bad agency will do the opposite.

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

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

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

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

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

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

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

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

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

But it is something.

And I was able to say it.

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

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

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

Posted in Values & Ethics

Valour without renown.

Painting of Éowyn and Aragorn from Lord of the Rings.

“A time may come soon,” said he, “when none may return.  Then there will be need of valour without renown, for none shall remember the deeds that are done in the last defence of your homes.  Yet the deeds will not be less valiant because they are unpraised.”

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

I am taking this quote entirely out of context, because the words valour without renown have been floating around my head a lot in recent years without context, and finding their own context within the world I find myself living in.  So don’t expect literary analysis here, nor any take on these words other than my own.  Which is both larger and smaller in scope than the original context.

Valour without renown seems on the face of it to be talking about courage — possibly especially battle-courage — without outward recognition, without going down in history, possibly even without a history existing to go down in.  And that is one piece of it, one way it can happen.  In a broader sense you could talk about courage in general, without praise in general.

But there’s one thing that this keeps distilling itself down to for me, with diamond-like precision and clarity.

It’s doing what is the right thing to do without any reason or incentive other than it being the right thing to do. Not just courage, but any right thing.  Not just recognition, but any sort of outward motivation, or any expectation of reward of any kind.

This is both simpler and more complicated than it sounds.  The hardest thing you can do but from some perspectives, easier than many of the alternatives.  Easy to describe in three words, and impossible to describe even if you had infinite words.  Not contradictory at all, yet good at producing sentences like these ones when you try to approach it wielding language.1

It’s also one of the most important things any of us can learn right now.

Then there will be need of valour without renown… Yet the deeds will not be less valiant because they are unpraised.

J.R.R. Tolkien. The Lord of the Rings (p. 784). Harper Collins, Inc.. Kindle Edition.

It’s no secret that the world is extremely messed up at the moment.

And my friends and I, we’ve all been noticing patterns in how it is messed up.  Patterns that we have trouble putting into words.  My friend’s cat has cancer right now, so maybe it’s for that reason that the word malignant comes to mind so strongly.  Or malevolent, or just plain evil.  As in, things that feel more like there’s a whole pattern of nasty forms of intent behind them than, say, random forces of nature seem to have, no matter how brutal.

And most of us are at a loss as to not only how to describe such a thing, but what to do about it.

One fortunate thing about the world is how many and varied the things within it are.  People alone make up billions of variations on those things, and there’s lots of things in the world besides people.  For each one of us, at any given time, there are many good things we can do for the world, and many possible ways to go about doing those things.  Some may be better things, and better ways, than others.  But which one is the best choice varies based on timing, context, person, and every possible way the situation can vary.  Sometimes there are more choices than others, sometimes there seem to be few or no choices, sometimes all the choices have terrible consequences.

But there are always many ways to do the right thing.  And each one of us can be a part of doing that.  Sometimes it’s something seemingly tiny and insignificant.  Sometimes it’s something seemingly huge and obvious.  Sometimes it’s both, sometimes neither.  And almost always, in any situation, there are many choices.

And telling right from wrong is rarely as easy as stories make it out to be.  And very few things are all right or all wrong.  And in very few cases do we learn the full consequences of our actions, either at the time or even in hindsight.

But we still should be making the effort.  In times like these more than any.

I’ve talked about this before from time to time.  Mostly in the context of death.  Personal death, death of a culture, death of a species.  But death.  Destruction.  Even the “end of the world,” as most people see it.  Situations that seem hopeless.  Where it’s tempting to say that trying to do the right thing is pointless.

It’s at those times that doing the right thing may matter more than any other time.

If the way you treat someone right now matters, it matters just as much when you are thinking about the fact that one day both you and the other person will be long dead and nobody living remembers either of you.  It may matter even more knowing that.  So why is it that when people think of ‘hopeless’ scenarios, they think that what they do doesn’t matter in light of their own death or the extinction of their species or some other large or small catastrophe? 

To me, it matters more, it always matters more, knowing we won’t always be around.  There’s always a responsibility to other people in the now, even if history as we know it ends tomorrow.  There’s always a responsibility to the people and things that come after history as we know it ends. 

Because the world is made up of so much more than ourselves alone.  And the world functions as all of us acting on each other.  Not isolated people or cultures or species floating around as individuals with no effect on the world around us.  What we do always matters whether other human beings ever seem to notice or care.

And that’s just one tiny piece of why this ‘valour without renown’ thing matters so much.  It’s the part I’ve described the most before, the part I have the easiest time putting into words.  And that part isn’t easy to put into words.

One of the most important things we can learn is to be motivated enough that if it ever comes down to it, we can choose to do a very difficult right thing to do, utterly regardless of what reaction the world around us appears to have to it. 

Sometimes it’s difficult because it’s something huge and scary.  But sometimes it’s difficult because it’s something seemingly small and insignificant when we’d rather make a grand gesture of some kind.  Sometimes it’s difficult because there are so many right things to do it’s hard to know which one to choose.  Sometimes it’s difficult because it’s hard to tell what the right thing is, or even if there’s anything you can do that’s right enough to do it.  Sometimes it’s difficult because it feels like doing nothing, even though refraining from action can be just as significant and important as acting, sometimes.  Many things can make it difficult.  But everything makes it worthwhile to try.

And trying is the most any of us can promise, I think.  We can say we’d do the right thing, but until we’re in the situation, we don’t know what obstacles we’ll be up against, from within and without.  We don’t even know if we’ll be aware we’re in that kind of situation at the time.

But we can try.

We can make the effort.

That’s all we can do.

And that’s doing a lot.

But hard times, times that people think of as hopeless, those are the times when we all need to be thinking about how to figure out a right thing we can do, and do it to the best of our ability.  Regardless of outward consequences.  A lot more depends on that than people sometimes realize.

And that’s actually a good thing.

Believe it or not.

1The Tao Te Ching sums this kind of thing up pretty well:

The bright path seems dim;
Going forward seems like retreat;
The easy way seems hard;
The highest Virtue seems empty;
Great purity seems sullied;
A wealth of Virtue seems inadequate;
The strength of Virtue seems frail,
Real Virtue seems unreal;
The perfect square has no corners;
Great talents ripen late;
The highest notes are hard to hear;
The greatest form has no shape.

Lao Tzu, Tao Te Ching, translated by Gia-Fu Feng & Jane English
Posted in Developmental disability, HCBS

Enjoying something doesn’t make it okay.

Nor does it make it okay to hurt someone because they enjoy what they’re getting to do while you’re hurting them.  (Note:  Throughout this post, remember that anything that happens to me is happening to other people, and that’s one of the reasons I write about these things.  And as usual I’m not asking for anything that any other client doesn’t deserve as well.)

I had a recent and very surreal meeting with some people from Howard Center.

One of the many surreal moments came when Lauratried to bring up the issue of medical neglect within the recreational services I was getting.  I was part of a community garden.  I needed help maintaining my plot.  I could do some things but not others.  Anyway, they basicaally made me do things a person with severe osteoporosis and autonomic dysfunction should never be made to do, with regards to bending, lifting, and heat exhaustion.

The woman from Howard’s response was a bewildered “But I thought Mel liked gardening.”

Yeah.  I like gardening.  I don’t like bending clear to the ground with a stress fracture in my vertebra and recently healed rib fractures all over the place.  Nor do I like not being able to take breaks to avoid heat exhaustion without all assistance with the garden stopping for the day.

And yeah I actually did enjoy getting on the ground and getting my hands in the ground and all that.  Even when it was bad for me.

It doesn’t mean that what they did to my body was okay.


That is a picture of me doing something I loved doing and was proud of.

That is also a picture of me being forced to do something in a way that was physically dangerous to me.

These things are not contradictory.

In fact, it’s very common in human services for them to go hand in hand like this.

The fact that I enjoyed gardening doesn’t make it okay for them to insist that I garden in a way that’s unsafe2 for me or get no chance to garden at all.

Actually, the fact that I enjoy it makes it worse that they did this.

Because they can use what you enjoy in order to get you to do things the way they want you to do them.  Even at the risk of great harm to yourself.  Because you’re way more likely to agree to do something like this if you enjoy the activity in question.

So.  No.  My enjoying it doesn’t make what happened okay.  It makes it worse, if anything.  You shouldn’t have to risk broken bones and heat exhaustion to get any chance at all do things you like doing.  But that was the choice I was given.  And it’s not okay.  It’s far from okay.

Real Social Skills has a good post on a related topic (which I can say from experience with behavior mod, is true even when you do enjoy it, it can still be harmful):  Appearing To Enjoy Behavior Modification Is Not Meaningful

1 Laura is:

  • My durable power of attorney for healthcare
  • Frequently my cognitive interpreter at meetings
  • Someone who helps me advocate for myself and is much more effective at it than I am
  • My ‘second mother’ (and eventually will legally adopt me), has served in a semi-parental role since I was 17.  (Doesn’t replace my parents, but has helped them out a lot.)

So she’s there at a lot of important meetings.  One of the most important things she does for me is cognitive interpreting:  She helps me understand what other people are talking about, and helps them understand me even at times when I’m unable to get language across.  This is a form of interpreting that most people don’t even know exists.  Sometimes also called English-to-English interpreting when it happens in English.

The fun part is when she says what I’m thinking, I verify that she’s indeed said what I’m thinking, and she’s told that she couldn’t possibly know what I was thinking because the other person couldn’t tell what I was thinking.  If the other person could tell that well what I was thinking, I probably wouldn’t need a cognitive interpreter so badly.

2 Because people seem to use ‘unsafe’ to mean anything from dangerous to uncomfortable these days, let me clarify that I mean dangerous.  Heat exhaustion is dangerous, especially when you have autonomic dysfunction.  Broken bones are dangerous.  Broken bones when you have adrenal insufficiency are especially dangerous.  This wasn’t subtle.

Posted in Being human, family

“Bet your ass we’re paranoid!”

Oryx Cohen recently tweeted this photo of psych survivor/ex-patient activists with a protest sign saying “BET YOUR ASS WE’RE PARANOID.”

I grew up on stories of a great-grandma who slept with a hatchet under her pillow.

She was afraid the sheriff was coming for her, you see.  This was supposed to confirm she was crazy.

Maybe she was crazy.  I don’t know.  But the thing is, the sheriff did come for her.

And he took her to the state mental institution.

And she eventually died there.

So if she was “paranoid”, if she was sleeping with a hatchet under her pillow, maybe she had reason to be.

Society treats institutionalization as the inevitable result of disability.  It’s not.  It’s a widespread, ongoing crime against humanity.  Just because it’s socially acceptable doesn’t make any less of one.

Posted in Death & Mortality Series

“Are you at peace with your decision?”

This post is part of my Death & Mortality Series.  Please read my introduction to my Death & Mortality series if you can, to understand the context I write this in.  Thank you.

What do you imagine is happening when you see this scene:

I am lying in a hospital bed, very ill with aspiration pneumonia and starvation.  I have a visitor from out of state, someone who recently lost her father to pneumonia and wants to see me just in case.  A doctor walks in.

This is a teaching hospital, so he’s not alone. He’s followed into the room by a line of assorted med students, residents, and the like.  I call them ducklings, because they followt he main doctor around in a line.  Someone online said “Not ducklings, doclings.”  So now they’re doclings.

So the pulmonologist — not my pulmonologist, just a pulmonologist — walks into my room followed by a gaggle of doclings, who fan out around my bed.  And the first thing out of his mouth is a solemn, “Are you at peace with your decision?”

I say yes.

He repeats his question, “Are you at peace with your decision?”

I say yes.

This keeps happening until he solemnly leads the doclingsgout

What would you assume was going on there?

Because I’d assume that I’d chosen to end my medical treatment and go home and die, or something along those lines.

But that’s not what he was doing.

His question was about whether I’d be at peace with getting the feeding tube that ultimately saved my life.

Guess what, doctor?

I’ve had feeding tubes for six or seven years now.

I’ve had my share of complications.  Infections, abscesses, a tube wrapping around my intestine.

I.  Still.  Want.  My.  Tubes.

My tubes are life, not death.  When you get a feeding tube, nobody should ever treat it as if you’ve just chosen to die.  But they do.

For my 38th birthday dinner, I had soup:  Sweet Pea (sweet peas) and Super Greens (spinach, broccoli, green peas, and coconut).

Mel eating green soup through hir J-tube.

Then I had kombucha.

Photo on 8-16-18 at 1.25 AM #2

I enjoyed all of it.

And I’d never have reached the age of 38 without my feeding tubes.

So the answer to the question is still the following:

Yes, but your question and the way you’re asking it could get someone killed.

Stop treating people choosing to live as if we’ve chosen to die.

Posted in Death & Mortality Series

Death & Mortality Series.

Hello, and welcome to the first post in my Death & Mortality series.  You can read my Death and Mortality posts any time with the Death & Mortality Series category on this blog.  This post is essential to understanding the context of any post I make about my experiences and viewpoints around death and mortality, so if you’re able to read it please do.  It will explain what I do mean, what I don’t mean, and why I am planning to write so much about death at all.  And especially this post explains a particular way I do not ever want my posts about death taken or used.  So moving on…

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

I have meant for a long time to write a long series of posts about my relationship with death and my own mortality.  But the sensitive and complex nature of the topic has always stopped me.  It’s not the kind of topic where my views can be summed up in a single post.  At the same time, if I posted some of the things I believe and experience, I worry they could be used out of contexts to support viewpoints that have real-world deadly consequences for disabled people.  So I have hesitated to post about it except in certain selective contexts.  And I have let many important things go unsaid.

Because death is an important topic for everyone.  It’s the one thing that all people are guaranteed to experience.  And there are a lot of taboos about even discussing death.  So I want to discuss my relationship with death in detail.

But I also want to say up-front that I speak for nobody but myself and maybe any others who may feel the same as I do.  (It’s not uncommon, but goes largely unspoken.)  And that I never mean to imply that my experiences ought to be the same as another person’s experiences.  Your relationship with death is deeply personal.  Everyone has a different one.  That is not a bad thing.  Lots of people see death very differently than I do.  Lots of people experience their own mortality and that of others in a very different way than I do.  That diversity of experience is probably a good thing.  I in no way intend to say that everyone can or should view their own death or that of of others in the same way I do.

That said, I do have certain views about death that go beyond the personal.  For instance, my views on the way disabled people face ableist assumptions that kill us on a regular basis.  Those are not just my personal views about facing my own mortality.  Those are views that I do think are important on a wider scale than me and people like me, because those ableist ideas are out there killing people every single day.  They have almost killed me more than once.  And I draw a distinction between what’s essentially a political standpoint (my views on death and disability), which is intended to be taken broadly, and things that deal with my very personal, very subjective relationship to death and my own mortality.  Hopefully you can understand there’s a distinction here, even if the two have some overlap.

And it’s that tension between a very private and subjective personal experience, and a political view about ableism that is already killing people, that makes this such a difficult topic for me to discuss.  Because my relationship with death is extremely friendly in nature, my views of death are very positive.  But part of that deadly ableism out there is the idea that disabled people are better off “accepting” death, or just plain better off dead.  And I don’t want my personal acceptance of death to ever in a million years be used to justify the idea that disabled people should just accept our fates to die and not fight for our lives like anyone else would.  That’s not the kind of acceptance I talk about when I talk about my personal acceptance of death, and anyone using my personal acceptance of death to justify DNRs for all disabled or potentially disabled people or something is flagrantly misusing my words out of context to support things I would never support, and will be treated as such.  (And no, I will never have a DNR, that’s not what I mean when I say I accept death.)

But the real reasons I want to talk about death are more related to the unexpected personal experiences I have had along the way.  Far from feeling morbid, my relationship with death has long been extremely life-affirming.  And while it may sound like and dovetail well fo the most part with certain viewpoints out there that are becoming more popular or at least more openly spoken of, there are sometimes differences that are important.  And everyone’s various experiences of these things are important, and not things that should have to be hidden in the shadows to make a death-terrified society comfortable.  Nobody should have to talk about these things in public, but it should be something people can have a public discussion about.

Obviously the topic is also highly emotionally charged for just about everyone.  Most people have strong feelings about death whether they think about it regularly or not.  It’s something everyone encounters and has to grapple with, and everyone responds to in different ways based on everything from personality to culture to personal experiences in life.  Our own mortality shapes us, the loss of loved ones shapes us, and these things can make death an extremely difficult topic.  So does the fact that it’s in many cultures something you’re just not supposed to talk about.  And where there are often rigid views that people are expected to hold.  So I totally understand how emotional and difficult discussions of death can be for people in a huge variety of ways.

Also, my posts may get into specific religious and spiritual views, or things that sound like religious and spiritual views, that are personal to me.   All cultures and religions have extremely varied views on death, and many people are atheist, not religious, or have very specific personal views that don’t follow any particular religious view.  I respect all of those viewpoints and how they can differ both between and among themselves.  Please respect my own views, and that my holding and discussing those views does not mean I am trying to force anyone else to believe the same things I do.  These things are, again, very personal.

All of these things have made making even one of the posts I want to make, very difficult.  But I do want to make a series of posts dealing with death specifically.  And writing this, so you understand the context I’m doing it in, is the first step.  And the step that has kept me from writing any of the others.

I don’t know how fast I will write more posts, or how many I will write.  Whether I write one or dozens, be aware that each is only a small piece of a larger whole.  Some posts may even seem to contradict each other at first glance, especially if you’re unfamiliar with views similar to my own.  (People often expect one view to be clustered with a bunch of other views in a certain way, and my views on just about anything do not tend to follow those expectations very well.  It makes it hard to communicate sometimes.)  Like many people would be a little confused by I completely accept death and even welcome it as an important and beautiful part of life and I want to live as long as I possibly can even at costs other people would find unacceptable coming from the same person.  But those are viewpoints I hold and they don’t actually contradict each other.  And many people assume the only reason someone could possibly want “extraordinary measures” medically is an extreme fear of death — not true either.  So just… please try not to assume too much from a single post, or you’ll get confused.  If I could make one post that summed up everything, it would’ve happened already.


  • I’m making a series of posts about death and mortality.  I don’t know how long it’s gonna be.  You can find it in my Death & Mortality Series category.
  • Some posts will deal with highly personal views.
  • Some posts will deal with more broad political and ethical views, especially around disability rights and deadly forms of ableism.  When it comes to these broader topics I am going to sometimes say when I think certain views and policies and systems actually harm and kill people.
  • Each of us deals with our own death and mortality differently for a huge number of reasons, and just because I deal with mine a certain way doesn’t mean I’m telling you that you have to deal with yours the same way.
  • I respect the many different cultural, religious, and spiritual perspectives that exist out there regarding death, please respect mine.  In stating mine I’m not trying to say yours are bad or that everyone should share mine.
  • Please understand each post is once piece of a complicated issue.
  • If this is too intense for you, feel free to skip it.
  • This is all extremely important to me.


Posted in Being human, Developmental disability service system

Please quit telling me to ‘calm down’ when I give urgent information or ask questions.

I’m going to lead with a quote from Jim Sinclair and discuss it:

Most autistic people who are capable of formulating questions have frequently experienced the following scenario: We ask for information that we need in order to prepare ourselves for a new experience. Instead of answering our questions, NT people tell us that we don’t need to ask these questions at all. We just need to relax and stop being so anxious. The fact is that being able to ask questions, and getting clear answers to our questions, and thus knowing what to expect, are often the very things autistic people need in order to be able to relax and not be anxious. Asking a lot of questions about the details of a situation is usually not a “maladaptive behavior” that increases an autistic person’s anxiety. More often it’s an adaptive strategy that an autistic person is using to reduce anxiety or to prevent being in an anxiety-provoking situation in the first place. It’s very important for us to have thorough explanations and ample opportunities to ask questions.

Jim Sinclair, Cultural Commentary: Being Autistic Together

So first off be aware this quote is from a specific context.  It’s an extremely long article on specific experiences of autistic people’s self-created communities and cultural values.  So if your first impulse is to think “But it’s not only autistic people who’d encounter this,” you’d be totally right.  But you’d also be missing the fact that it’s quoted out of context from an article that is about autistic people, so it’s gonna mention autistic people explicitly.  Just like an article by and about transgendered people is gonna mention transgendered people explicitly.  It doesn’t mean it doesn’t apply to anyone else in the world.

Anyway, I mostly agree with Jim.  My only disagreement is the role xe puts on anxiety in the first place, when I often encounter this in situations where anxiety is not even a factor.  When it is a factor, it works exactly how xe says it works.  But it’s not always a part of things in the first place, and then people just drag anxiety into it as if you must be anxious because they think you are.

Example of something that had absolutely nothing to do with anxiety:

I go into the emergency room around 8:30 pm one night to be seen for cellulitis.  I’ve been told (I later find it’s untrue) that I’m not allowed to bring meds from home to the ER.  I know that I’m likely to still be there at 11 pm, when I am due a dose of hydrocortisone that is extremely time-sensitive: I can’t survive without hydrocortisone and my body makes absolutely no cortisol.  I know that this hospital doesn’t have liquid hydrocortisone that can go through a J-tube,and that the pharmacy has to make a suspension by hand, and that this takes time.  So I know they’re gonna need advance notice if I’m going to get this medication on time.

So after describing the infection, I mention to the triage nurse that this is gonna be a serious issue if the med gets missed or delayed, so they probably want to prepare for the situation in advance.  I ask if this is something they can do and be aware of so I’ll actually get the meds.  I’m doing this in front of an on-call staff person who doesn’t really know me that well.

The on-call staff person immediately starts all the crap they’re taught about calming me down, redirecting me, making sure I don’t have any anxiety, and telling me not to think about the hydrocortisone.  I get pissed off and tell him it’s important.  He tries to “de-escalate” me.  It goes round and round and round.

Mel attempting to look calm.
Do I appear chill enough yet to have a conversation without being told to calm down every time I say something!?!?! WTF.

The time gets nearer, and I am now back in an ER room, it’s approaching 11.  So I’m without information about whether they’re working on this, and want to make sure it’s actually happening.  So when the doctors and nurses are back there I’m talking to them about it.

And the staff person is saying it’s not eleven yet so I need to stop ‘worrying’ (preparing people in advance for something that needs to be on time and takes time to do, especially in a busy emergency room when I’m not there for adrenal insufficiency) until it’s actually eleven at which point we can address this.

And any time I seem annoyed with him, or concerned, or even try to discuss the matter, he says it’s anxiety and I just need to calm down and not think about it and everything will work out fine.

Everything did work out fine, but only because I did prepare them in advance, so they had time to write the orders and get the suspension manufactured in their pharmacy and delivered to them by eleven.

I also learned you are allowed to bring meds into the ER, that night.

But anyway, that’s a good example of where there was no anxiety at all involved.  I was not trying to alleviate anxiety by giving information and asking questions, I was trying to get something practical done that required advance planning.

I might have ended up anxious if there were signs they weren’t listening to me.  But in that case calming down wouldn’t have been relevant, what would’ve been relevant would be finding effective ways to advocate for what I needed.  Which generally requires talking about something, not pretending it’s all gonna be okay.

Doing what the staff person said in that situation wouldn’t have just been anxiety-provoking, it would’ve been physically dangerous to me.  

Often the information I am asking for, when I ask questions, is a similar situation:  I need the information in order to make an informed decision about something important.  Other people may not know why I need that particular information, but I need that information.  Without the information, I can’t make the decisions I need to make.  And the decisions may be, and often are, important medical decisions.

And I’m often deliberately left in the dark.  People give me as little information as possible.  And when I ask for information, it’s treated as an emotional issue:  Frustration, anxiety, pushiness, stubbornness, whatever.  When if you just give me the information, I generally know what to do.  And people are always trying to fix my emotions (as if they need fixing) instead of just giving me the information I need.

Quite often, anxiety won’t even arise until you withhold information from me.  And then anxiety is just the by-product of a situation that will go away once I have the information.  But even so, I’m not usually asking questions to make anxiety go away — even if it does make anxiety go away to get the answers.  I’m asking questions to get information that I need for a practical purpose.  Anxiety, if it happens, or goes away, is just a by-product of the situation, not the focus of the situation.

There is no faster way to cause me some combination of anxiety, anger, rage, fury, and frustration, though, than to try to fix my emotions rather than try to give me information.  This goes double if you try to fix them by manipulation that you think is subtle.  It’s not.  I know what redirection is.  I know what it means when you accuse me of ‘escalating’ — as if you have no part in making the situation worse.  I know what all of your jargon is and what you have been taught to do about ‘situations’ like this one.

And the best possible thing you can do is give me all the information I need, including information I don’t have access to, or assist me in obtaining the information I need, as quickly and thoroughly as possible.  Be on my side, don’t sit there trying to calm me down.  And certainly don’t tell me to take a deep breath and calm down, focus on something else, watch television with you, or some other random crap.

And by the way, the respectful way to approach a discussion about whether I have anxiety I want calming down from, is to ask.  And ask in a way that makes clear you will accept any answer, not in a way that makes it clear that you expect me to say “Yes, I am making myself anxious by thinking about this and need to take my mind off it” or something.

And then if I do say yes, then you can ask me if I want help finding strategies to do so.  And then you can ask me about whether any particular strategy works.  You don’t just apply strategies at me or shove them down my throat.

It’s really not that hard to be respectful.

But it’s very easy not to be respectful.

It’s not respectful to jump in and assume that I’m making myself anxious and want you to help me calm down.  Or that I’m making myself anxious and need you to help me calm down whether I want you to or not.

It’s not respectful to jump in and start manipulating me into calming down.  By manipulating, I mean all the things you have been taught about how to calm people down without telling them that’s your actual intent.  Like distraction, redirection, and other things that rely on the person not knowing what you’re trying to do.  Anything where you’re not being open and explicit about your intent to calm the person down, and anything that uses covert force, is manipulation.

Staff manipulate clients more than clients manipulate staff, but clients get called manipulative for doing ordinary people things that have no manipulative intent whatsoever.  So it might surprise you to hear these things described as manipulative.  But they’re manipulative.  (Clients do manipulate staff sometimes, but we generally do it because we have to in ways you may sometimes have trouble understanding.  Staff are taught to habitually manipulate clients, it’s very hard to be staff and not manipulate clients.)

Just about every strategy for changing someone’s behavior and feelings without them knowing is maniplative by nature.  That’s what manipulation is.  Many strategies for changing people’s behavior with them knowing is manipulative.  All behavior modification is by defintion manipulative whether it’s obvious behavior mod or subtle behavior mod.

Manipulative is not always bad but it is always an exercise of power.  Staff manipulating clients is especially dangerous at the best of times, because of the direction the power flows.  It should not be something you just pull out of your pocket every time you think someone needs to calm down.

It also helps not to be afraid of other people having and showing emotions other than happy shiny ones.  Sometimes people get stressed out, pissed off, freaked out, upset, and all-around discombobulated.  Sometimes people show it.  It doesn’t always need to be fixed and tidied away to accommodate your discomfort.  And often it’s a sign something is going wrong — like not having enough information, or not being listened to, or not getting the chance to give the right information to the right people — not a random thing a person is just feeling for no reason that needs to be brought under control before you even understand it.  These are perfectly natural reactions, you don’t have to manage them for us at the first sign we’re less than 100% chill.

Attempts to manipulate me into calming down will nearly always backfire because I can spot the manipulation a mile away and will get pissed off.  If you don’t want that result, don’t manipulate me.  Treat me with respect instead.  It’ll get you far.



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.

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 Being human

Are my regrets weird or is this graph wrong?

This morning I watched a TED talk called Don’t Regret Regret.  Now I wonder if my big regrets are somehow weird.

This is a graph they used to talk about what people most regret in their lives.

What we regret graph in order of most to least by percent:  Education (32), Career (22), Romance (15), Parenting (10), Self  (5.47), leisure (2.55), Finance (2.52), Family (2.25), Health (1.47), Friends (1.44), Spirituality (1.33), Community (0.95)
What we regret graph in order of most to least by percent:  Education (32), Career (22), Romance (15), Parenting (10), Self  (5.47), leisure (2.55), Finance (2.52), Family (2.25), Health (1.47), Friends (1.44), Spirituality (1.33), Community (0.95)

Most of my regrets are failures of love, failures of ethics, ways in which I have wronged people, and I don’t really see  those listed although some of them could fall under self, family, friends, spirituality, and community, if you stretched them.

I do wish I’d never set foot in a school, but if you asked me to list my biggest regrets that wouldn’t even come up in my head, so i’m surprised education and career are so high.

Possibly the thing I’ve done concretely in the world that I most regret is something I may never be able to discuss in public.  And that’s okay — privacy is a thing.  Just because I talk about a lot of things other people see as private, doesn’t mean I don’t have a right to determine what I am private about.  But I can say that I did what I think was a profound betrayal of another human being in the way I used power over them.  It wouldn’t have looked like much — or like anything bad — to most observers, but most observers wouldn’t have known shit about what they were looking at.  It was bad, I am sure it hurt the person, and I have a hard time forgiving myself for it.

I also regret a lot of things I took part in that I am told that because of my age at the time I really wasn’t 100% responsible for them, especially given what I was led to believe by my family.  (Sorry for being overly crytpic here.)  But it makes me wonder at what point a person becomes responsible.  Which I suspect depends on the situation and the person, rather than being something set in stone that just happens.

At any rate, I have tiny regrets that fit parts of this graph, but my big regrets really aren’t on or near the top of the chart here.  Or on the chart at all.  The little regrets are ones that might come to mind time to time, but are easily banished and forgotten.  And that would certainly not pop into my head if you asked me to name 12 or even 24 things I regretted.

I wonder if I’m weird or if the way they came up with this graph somehow doesn’t represent how most people would see their regrets.

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…