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 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 Developmental disability service system

Walls and doors

An Accent 800 communication device showing the main Unity screen with some of the words from this post at the top.
How I wrote most of this post.

You think I don’t see what you are doing.  You think what you are doing is okay or even good.  Sometimes you don’t even notice what you are doing.  But you are doing it.  And I see you.

Understand that, if nothing else:  I know what you are doing to me.  I feel what you are doing to me.  I may not be able to put into words exactly what you do or how you do it.  I might not be able to resist the ways you are changing me.  I might not be able to stop you.  But I see you, I know what you are doing, I am awake and you can’t put me back to sleep.  And now, finally, I am able to tell you and the rest of the world what you’re doing and why it’s hurting people.

First, though, who I’m talking to and why.  Because it is important to understand what I am and am not saying, and to which people  And who I am and why I’m writing this.  Every thread woven into this fabric is important.  Leaving out any will only confuse things.  I’ll start with myself.

First I’m a human being.  I don’t want to go into too much detail, so this is the information that seems important.  I am 37 years old.  I have been a client of the developmental disability system for my whole adult life.  I’ve spent all my life fighting to be a human being in a world that sees people like me as something closer to things than people.  Words have never been easy for me, but I’ve struggled to achieve the ability to see things nobody talks about and then describe them in language.  I have achieved a lot in that area, but it’s come at the cost of other communication abilities.  Hence I can sometimes write eloquently about complicated topics, yet not be able to tell you something supposedly simple, even if it’s important.  And each topic can take years to learn the words for:  Please remember I’ve spent 37 years with no ability to describe today’s topic, and only a day and a half able to tell you what I can see.

So that is all you need to know about me right now.  So I’ll tell you a little about you.  Because my intentions are different towards different people as I write this.

Some of you are nothing but cold-blooded manipulators.  You know already what you do and don’t care.  I will tell you this:   I see you.  And most people in my situation are perfectly aware of you.  My goal is to show the rest of the world what you do, so that you will be less able to do these things.

Some people are not sadistic or are convinced, one way or another, that what they do is okay, or at least harmless, or at least they mean well.  Their behavior is not okay.  To you, I want to say I see you too.  I do care that some of you mean well or don’t fully understand the harm you do.  But the harm remains, anyway.  The more you hide from the reality of what you do, the more you’ll keep doing it.  And people like me bear the brunt of the harm.  So you need to stop a denial that might protect yourself but doesn’t protect us.  And you need to stop finding ways to justify your actions to yourself.

Some of you, like me, experience this manipulation firsthand.  If you’ve never known what was happening, I’m sorry to be the bearer of bad news.  If you’ve already noticed, then I’ll say you’re not alone.

But I have a broader message to everyone.

We see what you’re doing.  We know what you’re doing.  We feel what you’re doing.  We understand what you’re doing.

You manipulate us by restricting our choices.  You make it easy to do what you want us to do.  You make it more difficult to do what you don’t want us to do.

Imagine our possibilities as an open field where we can walk in any direction.  You put walls in the field so that we can’t walk in the directions you don’t want us to walk in.  You then put doors in areas you might want us to walk in.  Then you hold open the doors.

So you stop us from doing what you don’t want to do.  And then you make it easy to say, “Here’s the only direction you can go.”  Even though the only people restricting which way we can go is y’all in the first place.

The walls can take the form of discouragement or threats.  They can also just take the form of making it harder to do things in those directions, in ways that can be very subtle.

Let’s say you want me to engage in some independence theater with you.  So you want me to bend down and put cat food in the cat food bowl.

So any time I ask for help or mention the cat is hungry, you basically ignore me.  You may pretend I didn’t say anything.  You may try to make yourself look so busy that you couldn’t possibly crack open a can of cat food and spoon it into a food bowl for 30 seconds.  You may talk about all the things you have to be doing right then.  You might say “I’m not doing that for you.”  You might keep doing what you’re doing, pointedly ignoring what I said.

That’s the walls.

Then the door is that you will try to make it easier for me to just do the cat food than to ask for help.  You might ‘redirect’ me towards doing it independently by telling me out loud that I can or should do it.  You might tell me exactly where the cat food and other supplies are.  You might even get the supplies out and give them to me or put them near me physically.  All of these things are opening doors towards me doing it myself.

That is just one example.

It doesn’t have to be independence theater.

You can do this with literally anything you want us to do:  Actions you want us to take and not take.  Thoughts and feelings you want us to have and not have.  All you have to do is make it hard for us to do anything but what you want us to do, and then make it easier for us to do the thing you want us to do.

You have no problem with this, usually, because you think you know better about our lives and choices than we do.  You think you know what’s best for us.  The only issue is move us in that direction.  So you do.  And if you are skillful enough, you can maneuver us into doing what you want without ever saying exactly what it is you want out of us.

But we see you.  Oh, we see you.  We see what you are doing.   And that is why I am writing about this.


I owe more than half of this blog post to the Unity software on an Accent 800 by Prentke Romich.  I started writing it a long time ago and finished it today as part of my series on what the developmental disability service system can be like.

 

Posted in Developmental disability service system

We are living out their dreams.

We are living out the dreams of the people who run this system that is supposed to exist for our benefit.

They have detailed, elaborate dreams for us.  Sometimes to make them feel good about themselves, sometimes to make themselves look good to others, sometimes a little of both.  Sometimes to feel like they’re making a difference.

We take on their dreams as our own.  We live them out as living dolls.  It’s especially confusing when their dreams are similar to things we want.  But quite often, we just go along.  Quite often, we learn that what they want of us is what we want.  And if we don’t go along, we can encounter huge amounts of trouble.

They’re skilled at manipulating us in ways that they are not always fully aware they are doing.  Sometimes they sincerely believe they are helping us do what we want.  Instead we are doing what they think they’d want in our place.  Or just doing what they want for us.

And we have to smile and be grateful and pose for the brochures.

And we can have our real dreams taken away — the little bit of them we get — if we show we are not satisfied with their dreams for us.

This can be brutal.  At its worst, it’s violation, puppetry, at a deep level.  We are human beings.  We have minds of our own.  Some of us manage better than others in these circumstances.

And if we say we don’t want these things, that threatens their entire self-concept, so their reaction can be out of proportion, even dangerous to us.