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.

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Author:

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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