Posted in Developmental disability service system, HCBS

Clichés & Platitudes & Control & Change

word cloud, largest words are want, control, and language.
Word cloud based on the “translation” chart by Dave Hingsburger further down this page.

Normally I don’t have that much of a problem with clichés, depending on context.  Quite often, something’s a cliché because it really is true, so it’s been repeated so often because it’s a reasonably accurate way to talk about reality.  But then there’s this other kind, which grates on my nerves…

There’s two of them, actually, but they kind of work in parallel.

There’s the standard cliché platitude they give you when you’re in the hospital and you’re pissed off about something.  it runs something like this:

“It’s so hard to come in here and have to give up so much control you normally have over your life, isn’t it?”

Well yes, and no.

Yes, the hospital takes control away from you in ways that are completely unnecessary. Like, things where there’s no actual reason for you to give up control.  And where giving up control can be not just annoying, but dangerous. But that’s far from the only reason a patient in the hospital might be pissed off at the hospital.  And they try to make it sound like it’s all a personal problem, with a personal solution.  And that solution is to give up control over your life gracefully, even when it makes no sense to do so.

I encountered one today that I hear less often, but that seems to stem from the same basic source, and have the same basic problems to it.

I have a staff person who’s leaving.  She’s worked for me for longer than five years and knows more about my care than either me or my case managers.  She does work that technicallly the case managers should be doing.  They sometimes call her a third case manager.  But in reality they seem to have very little idea the sheer amount of work she does, and knowledge she has.

Anyway, I am very concerned about the way management seems to be handling her leaving.  Normally when a regular leaves, especially someone known to be knowledgeable about a lot of things, their last month at the least, is filled with training and searching for replacements. That does not appear to be happening.  She is not getting the kind of leaving that a regular staff without her degree of knowledge gets, let alone one with the knowledge she has.

I confided my nervousness in someone.

They said, “Change is always hard.”

No.

No.

No.

That is not what is going on here.

I am more prepared than most people for the turnover rate in this field.  I have felt lucky the last several years to have staff who lasted for months or years.  Dave Hingsburger describes the turnover in the DD field as “Thursday” and he’s right.

I have learned to balance everyday emotional connection with professional distance, so that I don’t feel hurt on a personal level by staff changes. There’s people I’ll miss more than others, because I’m human and so are they.  And I will miss Hallie a good deal.  Just as I miss Zack and Rick.  There’s some people you do form a connection with.  But it’s a paid relationship, not a friendship, and you forget that at everyone’s peril.  Pretending it’s a friendship hurts everyone.

But at any rate.

The problem isn’t a personal connection I’ve formed with Hallie.

And the problem isn’t that change is hard.

The problem is that every time Hallie even goes on vacation, I end up with some kind of health crisis.  And management at Howard Center doesn’t prepare either me or other staff for the sheer amount and kind of work required to make up for what Hallie normally does.

Just as an example, last time she was on vacation, there was a doctor’s appointment.  And there was something urgent that needed to happen before the appointment — some blood tests.  I texted my case managers, and was basically told to handle the communication with the doctor’s office myself (something I can’t do), and otherwise to just wait until the appointment to get the blood tests (which defeats the purpose of having the results of the tests available by the time of the appointment).  And the whole thing was said in a casual manner, as if I hadn’t just been hospitalized and wasn’t about to be hospitalized again for problems the blood test was testing for.

If Hallie had been there, she’d have been in contact with the doctor’s office, and would’ve immediately taken me for the blood test.  Things would’ve gotten done. But she wasn’t, and they didn’t.  And even the doctor’s appointment was a mess because of lack of preparation.

And that’s just one example of what can go different.

She’s leaving for good now.

The case managers have not spoken a word to me about her leaving.

They apparently plan to put me on the “floater model” so that I won’t have a regular staff person at all.  Which for someone with my degree of medical issues, is a disaster.  I need someone with a stable level of knowledge about how my body works, not someone who changes every month.

Nobody asked me.

They never do.

I wouldn’t have even known if Hallie hadn’t told me.  Either about her leaving or about the floater thing.

They’re not training replacements.  There won’t be a replacement.  I was not asked or even consulted about what I thuoght was a good idea.

Major things are going to change.

They want this to happen.

Everything they do lately seems to be an assertion of their power and control over my life.

It reminds me of this chart, modified from the beginning of Behaviour Self! by Dave Hingsbuger:

 

Behavioural language of person with a disability English language translation of behavioural language
Hitting out I want control.
Spitting out food I want control.
Kicking the furniture I want control.
Swearing at staff I want control.
Face slapping I want control.
Refusing to participate I want control.
Care provider lingo English language translation of care provider lingo
I am concerned about your behaviour. I want control.
This programme is for your own good. I want control.
You need to learn to be appropriate. I want control.
Locking you into time out is helping you. I want control.
I’m sorry but because of your behaviour you have lost your commmunity outings, family visits, favourite foods, favourite television programmes, access to your bank account, visits from your boyfriend, access to an advocate, the right to vote at house meetings, access to the telephone, all of your civil liberties and any personal dignity you have left. I have control.

This kind of power struggle is going on right now, but nobody will acknowledge it.  But they are finding every possible way they can manage, to tell me they are the ones in control of my life.

And this kind of loss of control is a huge problem.  Not a platitude.  Not something that it’s reasonable to adjust to.  Lacking control in the ways I lack control over my life, in the ways people in the developmental service system lack control over our lives, is another one of those little crimes against humanity that gets overlooked because everyone accepts it as normal.

So no, I’m not gonna accept this gracefully.

I’m not gonna accept it at all.

And that’s not because I have a character flaw that prevents me being gracious and accepting my fate and all that.  And it’s not becuse I have trouble with change.

It’s because I have enough normal human reactions left in me that it bothers me to be treated as subhuman, and to see other people treated as subhuman.  (I know if they’re doing something to me, they’re doing it to others.  They’re not as individualized as they make themselves sound.  Most of my problems with them come down to human beings not being plug-and-play.)

And I’m getting really tired of Howard Center treating me like there’s something wrong with me for wanting the same control over my life that everyone deserves.  The kind all of them have and would be furious to have even an inch of it taken away.

I’m actually becoming a lot more medically stable.  I’m getting to where I can finally do a few things that aren’t directly related to medical problems.  In the past, my feeling better combined with Hallie leaving would mean that they were supporting both me and Hallie in getting ready for Hallie to leave.  As in, even just on a practical, logistical level, they would be helping us both prepare and vet new staff.

That’s not what’s happening.

Yet in their interactions with me these days, everything seems to translate to “I have control.”  

People shouldn’t get used to being treated like this.

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.