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

Smiling teeth with fangs.

Black and white photo of woman sitting at a desk smiling insincerely.
A picture from an article in Mouth Magazine, of a Nice Lady Therapist with allllll her teeth bared in a terrifying smile.

I didn’t want to get into everything my last post on Nice Lady Therapists and their war on human emotion.  But I want to say that my (mostly working-class, mostly Okie, mostly disabled) family has clashed with Nice Lady Therapists since the moment we came into contact with them.  And I’ve been in contact with some part of the psychiatric and developmental disability systems (different amounts at different times) since the age of seven.

By which I mean, there’s this way that Nice Lady Therapists, acting together, determine that their idea of correct behavior is the only possible idea of correct behavior.

So I lived in a residential facility for part of my teens.  And they had… problems… with my manners.  All kinds of problems.  Inappropriate happiness.  Table manners.  They actually told me I was completely disgusting and that nobody wanted to be in a room with me.  It went on and on.

The thing was, nothing they were getting on my case for was out of the ordinary in my family.

And then they’d get on my family’s case too.

It never occurred to them — or maybe they just didn’t give a shit — that my family came from a different cultural and class background than they did.

They just decided we were wrong and did everything they could to shape my behavior into something more acceptable to themselves.

Mostly they failed.

And the conversations that happened when my parents were like “But our kid isn’t doing anything wrong, we do that stuff too!” were every kind of condescending.

They acted like they were teaching me social skills.

They were actually more like trying to teach me their cultural norms as if they were the only cultural norms.  Or the only good ones.

And mind you, I’m always up for learning about cultural differences and how to bridge them.  That’s valuable information.

But I’m never up for being told that I and my entire family are disgusting, mannerless people with no redeeming value to our social skills until we can behave like something we are not, can’t be, and never were.

See, I value a lot of things about my culture.

I value being an Okie.

I value the things passed down to me by generations of poor and working-class Okies.

It doesn’t mean I think my culture is the best or that there’s nothing messed up about it, or there’s nothing valuable about other cultures.

But holy crap people, there’s nothing wrong with who I am to begin with.  And it’s ages of being told there’s something wrong with me that made it so hard to accept that I’m an Okie.  And accepting I’m an Okie has helped me work from a place of strength instead of always trying to be something I’m not.

And this stuff just starts to look like snobbery.

But in the developmental disability system and similar systems, it’s snobbery with a lot of teeth behind it.

A lot of smiling teeth.

With fangs.


For more where the photo at the beginning of this post came from, read Joe Ehman’s classic Mouth Magazine article, My Contaminated Smile.

Posted in Developmental disability service system

Nice Lady Therapists and their war against human emotion: class, disability, and culture.

Mel having an agency-unapproved facial expression.
Mel having some kind of facial expression that is probably condemned by Nice Lady Therapists everywhere because it’s not abstract enough.

Developmental disability service agencies often teach each other a set of cultural biases about how emotions are meant to be displayed.  Even if office workers didn’t come from that cultural background already, the agency molds them into that shape.  And the shape is basically an agency-middle-class fear of feelings.

Sure, they talk about feelings.  But they talk about them in the abstract.  And they have specific ways they are allowed to be expressed, and certain ways they call inappropriate.

You’re not supposed to show emotion in the way your body moves, the tone of your voice, the words you choose.  You’re supposed to discuss them in a detached, serene way and treat them like problems.

Clients run into trouble because of this.  Quite often we are not from that particular agency culture.  By reason of class, culture, or disability.

Front-line staff run into this as well.  They are often poor or working-class.  They often have a hard time looking like they’re not feelings things as well.  This can lead to friction with higher-level agency workers who are trained in agency-middle-class emotional expression.

A friend of mine calls the culture in question — or the people who act like this — Nice Lady Therapists.  It’s all about looking nice, never directly showing emotion, sounding bland and detached in a certain way, no matter what you’re feeling or thinking or doing.

Many people with developmental disabilities are gonna have a problem with this for a huge number of reasons.

Of course we come from all cultures and walks of life.  But our disabilities themselves can make it hard for us to absorb these cultural norms.  (Those of us who can, are gonna fare better in Nice Lady Therapist Land.  And there are plenty of us who can, to some degree, do Nice Lady Therapist.  I can’t.  At all.)  We often have different ways of relating socially, different ways of thinking, different ways of perceiving the world, and these things put us at odds with Nice Lady Therapist values.

Not to mention many of us come from actual cultures where those aren’t the values.

Take me.

I’m an Okie.  While I personally had a complicated class background (I call it mixed-class if I have to be brief about it), I come from generations of poor and working-class people as far back as anyone can remember.  Culturally, I express myself in a way that’s typical of a working-class Okie.

That means that if I am angry, you can see it on my body.  You can see it in the way I move.  You can hear it in the sounds I make.  You can tell from the words I choose.  I don’t mean that I make no effort not to be rude, or that I try to be mean, or something.  But if I’m pissed off, you’re generally gonna see that I’m pissed off.  It’s written into my every movement.  And I’m okay with that.

The same goes for just about any feeling I could have.  It’s not that people can always read my feelings accurately.  Because of biases and the kinds of disability I have, many people can’t read me very well at all.  But even when they can’t read me with perfect accuracy, they can generally tell I am feeling something.

It shows in my movements.  It shows in my voice.  It shows in my word choices.  It shows in my reactions.  Even if you don’t know what I’m feeling, you generally know that I’m feeling, unless you’re one of those people so confused by my facial expressions that you assume things are ‘blank’ when they’re not.  Which happens.  But nonetheless, you can generally tell feelings are going on if you’re looking at all (and most of the time even if you’re not).

Nice Lady Therapists tend to be terrified of anger, but also terrified of emotion in general.  They are terrified of it in others and terrified of it in themselves.  Someone I know who has worked in the DD field (and Nice Lady Therapists are all over every kind of human services field, DD is just one of them) has wondered if it’s because if they felt emotion, they’d have to feel that what is happening to people with developmental disabilities is wrong.  They’d have to feel what their conscience is telling them.  I don’t know if that’s accurate.  I was a little doubtful.  But when I ran it by a long-time front-line staff person they said “Actually… that could be very very right possibly.”  So it’s possible that’s one part of it.

There’s definitely class values in play as well.  There is in general a middle-class and upper-class fear of emotional expression that is taken out on people who can’t conform to it.  And there are cultural factors as well.  Some cultures are more emotionally expressive than others, and have different levels of tolerance for it.  But for whatever reason, working-class culture often tends to involve this disconnect with certain versions of middle-class culture, which is why I keep emphasizing class.

Disability is also involved.  People with developmental disabilities may find it harder to pretend we are feeling something we are not.  We might find it harder to detach ourselves from what we are feeling.  We might find it harder to act as if we don’t notice something that is happening.  We are sometimes more direct or blunt in our communication styles than usual.  We might find it hard to act like someone is our social better, even if we are trying to be respectful.  We might find it hard to speak indirectly or abstractly about something we are feeling right now.  We might even find it hard to speak at all if we are feeling strongly and may communicate through other means.  We might find it hard to pretend we perceive the world differently than we do.   We might find it had to be abstract about something that’s very concrete to us.

There are so many ways that being disabled puts many of us at a disadvantage here, even if we are doing our best to appear meek and respectful and passive.  There’s just a level where we have trouble stuffing ourselves into a corner sometimes.

Unfortunately, if the Nice Lady Therapists are hurting us, this can play out to our extreme disadvantage.

See, the Nice Lady Therapists may be doing and saying things that are causing direct harm to us.  They may be denying us help that is vital to our actual survival.  They may be threatening us with things that range from vaguely unethical to outright evil.

But they will be generally doing it sweetly, with a smile, and bland, neutral language that does not betray any ‘negative’ emotion, or really much genuine emotion of any kind.

If we respond with outrage — which a lot of us will — we come off looking like the bad guy.  And they use that against us.

There was a time when someone associated with me — a working-class woman with a developmental disability — got pissed off on my behalf about medical neglect that was getting so bad I was in danger of hospitalization.  She yelled and she said some things that made people uncomfortable.  She said exactly what she was thinking.  She looked and sounded angry.  This was over the telephone.  She wasn’t threatening, mind you, just angry.

We were then told that, despite the fact my agency is mandated to meet with me at least once or twice a week (which hadn’t been happening), they had two conditions upon which any meeting would depend.  One, we had to not discuss anything that would be related in any way to the grievance hearing about medical neglect.  Two, we had to not behave emotionally in ways that would make anyone uncomfortable.  I forget how they phrased the second one, but that’s basically what they meant.

The problem was, one thing we urgently needed to discuss during this meeting was my medical situation.  This was off-limits already.

Now they were basically telling us we weren’t allowed to be pissed off and show it.

My friend made an attempt to explain that they were imposing cultural norms on us that were not either of our culture, and also discriminating on the basis of disability.

They wouldn’t listen.

I tried to explain that they had a lot of nerve talking about us making anyone  uncomfortable given that I could have died and that is really uncomfortable.  I told them I would try to be civil but I could not guarantee I wouldn’t be angry and look angry because they were pissing me off.  We got hung up on after they told us they wouldn’t speak to us until the hearing.  (There was urgent medical stuff they needed to do before the hearing.)

So basically, they’d been putting my life in danger for weeks, but because they were able to be Nice Lady Therapist about it, then even the most threatening behavior they engaged in didn’t look threatening.

My friend flew off the handle about it once and they used it as an excuse to not speak to us about urgent medical issues that they needed to be helping me with.  And by urgent, I mean I’d had doctors telling me I belonged in the hospital or the emergency room for months.  I didn’t have the luxury of waiting until the hearing.

But their discomfort at our emotions was more important than the very real physical danger they were putting me in.  This is the dark underbelly of the Nice Lady Therapist thing.  They can be doing things that could result in your death, but if you show any emotional response, you are hurting them.

Personally, I’ve always been of the opinion that if someone is screaming for help, that’s never the time to correct their manners.

Also there’s this deal where DD agencies have to deal with people — as part of what they do — who are gonna be genuinely rude or even violent on a regular basis.  As far as I know, they are still required to deal with us.  They can’t actually say “I won’t meet with you until you behave” or there are people they’d never meet with.

So like, even if we’d genuinely been wildly unfair and insulting, they’d still have to meet with us.

But they can turn their discomfort into a weapon and use it to claim that if we make them uncomfortable they can avoid talking to us just because they don’t feel like being uncomfortable.  Even if we desperately need something from them.  And it is exactly when we desperately need something and they are not doing it, that we’re the most likely to get visibly angry with them.  And that’s a totally valid reason to get angry.

Mind you, it’s not only anger that makes them uncomfortable.  It’s most emotions, if expressed directly.  I’ve seen them squirm when one of us expresses joy in a way they don’t find appropriate.  I’ve been put on behavior programs for being excited in a way someone said was socially inappropriate.  (Flapping and squealing and jumping around, if you have to know.  It wasn’t like I was hitting people.  In none of the things I’m describing here did I do any harm to anyone.)  They’re genuinely afraid of emotion.

They train each other that emotion is wrong.  They teach each other how to be, or look like, Nice Lady Therapists.  They get both formal and informal training on how to redirect us away from showing emotion, how to punish us for showing emotion, how to hide or punish our emotions as much as possible so that they won’t become uncomfortable.

My file has something ridiculous in it.

It contains a blow-by-blow description of what I look like when I’m pissed off.

And literally all it says is that my fingers hit the keyboard I am typing on harder than usual.  So I type in a way that looks angry when I’m angry.

Mind you, I don’t get angry all that often.  Certainly no more often than the guy who wrote that file.

I have asked them how they would feel if they had a fight with their girlfriend or boyfriend, and then someone wrote down exactly what shade of red their face turned and how loud they yelled and which body language and cusswords they used, and put it in a file for strangers to read.

Because there’s nothing unusual about sometimes getting angry and sometimes looking angry.  It’s just that some of us in this world have privacy and some don’t.

So back to the file.

It also contains instructions on how not to piss me off.

They basically amount to manipulating me.

They haven’t figured out yet that I can see through that kind of manipulation especially well.

They haven’t figured out yet that the fastest way to genuinely piss me off is for people with real power over my life to manipulate me into thinking or behaving how they want.

So they manipulate me more, figuring I’ll get less pissed off.

I’ve told them the problem here, but honest and direct communication is not something they’re willing to do.

And as much as they love to spout crap about cultural sensitivity, they’ve never been remotely sensitive to my cultural background when it comes to expressions of emotion.  They act like these background differences don’t exist, for any of us.  When culture, class and disability play such a huge role in how we show emotions.  And when we are punished for showing emotions in a way that doesn’t go with Nice Lady Therapist culture.

So the Nice Lady Therapist can be saying “I am about to do something that will result in your death or serious illness.”

But the problem, then, is that we’re pissed and making the Nice Lady Therapists uncomfortable.

I beg to differ.

And mind you I will bend over backwards to be respectful when I can.  It doesn’t mean I don’t look and act pissed when I’m pissed, though.  And it doesn’t mean I will remain 100% civil when my back’s against the wall.  And even if I said things that were horribly unfair, they still technically have to deal with me.  But I didn’t.

Anyway, there are human service agency cultural norms around emotions and their appropriate and inappropriate expression.  Somehow the way they apply these norms always ends up with agency management at the top, people with developmental disabilities at the bottom, and front line staff often damn near the bottom themselves.

And this can have consequences that are more than just an annoyance.