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

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.